Tag: Prostate Cancer Blog

Month 59 – Resigned

On By DanIn Emotional Aspects, Incontinence, Prostate Cancer, RecurrenceLeave a comment

It’s been an interesting month, that’s for sure.

The emotional roller coaster ride of learning that my PSA moved upward has come to an end for now. In fact, I’ve pretty much resigned myself to the fact that it is what it is, and there’s little that I can do about it other than wait.

Have I resigned myself to the idea that the cancer is coming back? I don’t know. Perhaps. I certainly don’t want it to come back, but I’m coming to terms with the fact that it’s within the realm of possibility in a way that it hadn’t been before the increase in PSA. If I’ve resigned myself to anything, it’s that I’ll have plenty of PSA tests going forward, along with the associated anxiety that comes with each.

I remember my surgeon telling me there’s an 80% chance that I’ll be cancer-free at 10 years, so that means that there’s a 20% chance that it will be back. For some reason, my gut instincts are telling me that I’ll be in that 20%. I don’t know why. Perhaps it goes back to my first solo trip abroad.

I was flying from the United States to Japan as a midshipman going on my summer training cruise, and I was flying on a military charter that landed at Yokota Air Force Base. On arrival, they told us that 20% of us had been selected at random to go through a thorough customs inspection. I was one of the 20%. They dumped my duffle bag’s entire contents onto a nice stainless steel table, went through everything, and told me to repack it in less than 5 minutes. Just my luck.

I know. A silly comparison. Still, it’s how my luck runs sometimes. December will be an indicator as to whether that rule will apply or not.

I’ve been battling an early season cold for about two weeks now, and it just doesn’t seem to want to let go. The stress incontinence was remarkably good during the first week, but when the cold moved into my chest the second week, I went back into pads for protection as I coughed and coughed.

Perhaps the stress of the PSA results weakened my system a tad, but most likely, it’s just that I work in a museum where lots and lots of people–especially kids–come through.  Oh well.

DJTPC

Day 1,781 – Grappling with PSA Anxiety

On By DanIn Emotional Aspects, Recurrence2 Comments

Wow. This is going to be tougher than I thought.

Ever since that stupid PSA test crept upward from undetectable to detectable at 0.05 ng/ml, I can’t seem to get that fact out of my brain. Even when I can focus on something other than that, it’s still ever-present, lurking in the background ready to consume my thoughts at the first distraction.

Interestingly, I’m not sure it’s the possibility of the cancer returning that I fear, or even the side effects of potential salvage treatments (although some of those can be quite scary). It’s too early to think in those terms. My immediate concern is more about having to play this freakin’ waiting game and the possibility that I’ll be playing this waiting game every three to six months for years to come.

Yes, I’ve already suffered through PSA anxiety after the surgery, so you think I’d be used to it by now. But in a post-surgery world, each time the result came back undetectable, my confidence that I was one step farther away from cancer grew. Now the situation is reversed. With each test, it’s no longer an affirmation of the good news that I already knew (undetectable); now it’s a reason to worry about the unknown. “Did the PSA move upward? If so, how much and how quickly? How many ng/ml am I closer to recurrence?”

I know that each day is a gift and that we’re to live in the moment. Now, though, I feel as if I’m in a state of suspended animation, waiting for 2 December to roll around for the next needle prick. That can’t be. I need to be living for today in case tomorrow I cross the 0.2 ng/ml threshold.

Early in this adventure, I said that we can’t always control what happens to us, but we can control how we react to it. It’s time I followed my own advice–gain control over this PSA anxiety monster.

Wish me luck.

Stupid cancer.

Day 1,773 – Waiting Sucks

On By DanIn Emotional Aspects, Prostate Cancer, RecurrenceLeave a comment

As you can tell from the title of this post, it’s going to be a long three months.

This morning, my mind was filled with thoughts of prostate cancer and it took considerable effort to get focused on the task at hand at work, but I eventually succeeded.  Some of the thoughts centered on the fear of the unknown and the long wait to get to the known, and others were more administrative in nature regarding this blog.

Sometimes I think pulling the plug on this blog would be just what the doctor ordered. By maintaining it, it forces prostate cancer to be in the forefront of my mind at least monthly.  But I also know that by not maintaining it, that isn’t going to make my current predicament go away, so I may as well blog about it.  I’ve learned things from others in the process of doing this, and I know that sharing my experience has helped at least a handful of people along the way.  Besides, when you’ve been doing something religiously for almost five years, it’s a tough habit to break.

Of course, it being Prostate Cancer Awareness Month keeps the topic in my news feeds, too, and I feel compelled to work to increase awareness, so I guess I’ll just keep reading the stories.

On the bright side of this, the initial panic and fear have subsided.  I’m down to rational thought on what I should be doing or researching next.

Okay.  It’s late. I’m rambling.  Thanks for letting me think aloud. I’ll get this under control and will work on my patience…  Really.

prostate-cancer-awareness-hero-806x307,0

Day 1,770 – Let the Waiting Begin

On By DanIn Emotional Aspects, Prostate Cancer, Recurrence, Treatment1 Comment

It’s amazing how people in southern California forget how to drive when a little liquid sunshine falls from the sky.  Focusing on the horrible traffic in the rain kept my mind off the discussion that I was about to have. As soon as I plopped into the chair in the waiting area, the anxiety level shot back up.

The good news is that I’m not an overreacting drama queen. The bad news is that the doctor shared my concern about the movement in the PSA, but with a significant caveat.

In March of this year (after my PSA test in January and before this one in September), the hospital switched over to using the new ultrasensitive PSA test, so comparing numbers from January to September may not be a direct apples-to-apples comparison. With the new test, some of her other patients are experiencing the same phenomenon–undetectable for years, and now coming in at 0.03 – 0.05 ng/ml with the new test.

She did say, however, that she was concerned enough that this “warrants watching” to try and figure out what’s really going on, and she wants me to return in three months. The September reading will, in essence, be a new baseline uPSA, and we’ll see what December’s has to offer.

Doing the test sooner (like this afternoon!) would be too early after the 2 September test. By waiting three months, we’ll get better insight into what’s happening and what the uPSA velocity may be if it continues upward. The faster the increase, the more urgent the need for subsequent treatment.

We did briefly discuss what would happen if there are signs of recurrence. One of the first things that may come into play is getting a bone scan to see if it has spread. We talked of salvage radiation therapy (SRT) and a little about hormone therapy as options when we get to that point. We didn’t go into a lot of detail on either, mainly because I didn’t press for a lot of detail at this point and virtually everything she said fell in line with the research that I had done. It’s far too early to be thinking in those terms because we don’t know what we’re dealing with yet.

I did mention the recent studies that indicated that a 0.03 ng/ml reading on a uPSA was showing itself as a predictor of biochemical recurrence, and she really didn’t offer any insights on that one way or the other.

It appears that I’m probably headed back to a quarterly testing schedule for a while until we figure out exactly what’s happened. Just a change in testing methodology? Rising PSA?  Full moon?

My next appointment is 15 December. Merry Christmas!

Let the waiting begin.

[We now return you to our regular blog posting schedule, or at least until I have my next freak-out.]

prostate-cancer-awareness-hero-806x307,0

200th post!!

Day 1,769 – Getting Prepared

On By DanIn Emotional Aspects, Prostate Cancer, Recurrence, TreatmentLeave a comment

It’s the day before my meeting with my urologist, and I’ve been scribbling down the questions that I’m going to ask tomorrow. The Boy Scout in me  is coming out: Be Prepared.

Emotionally, it’s been one of my better days in the last few days. Yesterday, I was mad as hell in the morning and sad by sunset.

One of the infuriating things about this whole adventure is that there’s just sooo much information that’s out there, and there are so many different approaches to the same issue, that it makes it extraordinarily difficult to sift through it all and make sense of what I should do next. Then, of course, there’s the inherent bias introduced by perspective. Talk to a urologist, get one opinion; talk to an oncologist, get another; talk to a surgeon, get a third. While they all care about their patients, let’s face the fact that they are running a business and that can influence recommendations.

A case in point is the fact that a few days ago, I read something that made me think I would be a good candidate for salvage radiation therapy based on my Gleason score and time to PSA increasing. The next day, I read that, because I had negative margins, SRT wouldn’t really be an option, as the cancer would be outside the prostatic bed. Maybe I was just too drained and misread one or the other, but it sure can be confusing.

With luck, I’ll have some answers by lunchtime tomorrow.  Look for an update in the afternoon where hopefully I’ve been proven to be an overreacting drama queen.

prostate-cancer-awareness-hero-806x307,0

Day 1,768 – More Research & More Questions

On By DanIn Prostate Cancer, ResearchLeave a comment

Even I thought I may have been overreacting to the change in my PSA, and that I may simply be embarrassing myself spouting off the way I have.  Still, it’s better to vent and look silly than ignore the potential problem.

Of course, I had to continue my research, and the more I dug, the more I learned, and the more I began to believe that I may not be overreacting at all.

In this instant Internet information age, it’s easy to find tons of material.  In my Month 58 – Welcome to PSA Anxiety post, I quoted a Dr. Chan from Johns Hopkins University:

On a technical level, in the laboratory, Chan trusts the sensitivity of assays down to 0. 1, or slightly less than that. “You cannot reliably detect such a small amount as 0.01,” he explains. “From day to day, the results could vary — it could be 0.03, or maybe even 0.05” — and these “analytical” variations may not mean a thing. “It’s important that we don’t assume anything or take action on a very low level of PSA. In routine practice, because of these analytical variations from day to day, if it’s less than 0. 1, we assume it’s the same as nondetectable, or zero.”

On closer examination and research, though, that quote came from early 2000, over 15 years ago. There have been advances in technology in 15 years.  Lesson learned: Even though the information came from a trusted source, it may not be the most current.  Read the dates!

There have been subsequent studies by UCLA and even Johns Hopkins that suggest that today’s ultrasensitive PSA tests (uPSA) are more reliable and can, in fact, be good predictors of biochemical recurrence (BCR).

From one article on the Prostate Cancer Infolink website:

Ultrasensitive PSA reliably predicts eventual biochemical recurrence (a UCLA study)

Researchers at the University of California, Los Angeles (UCLA) looked at available evidence that the uPSA test might afford radiation oncologists the opportunity to treat patients late enough that they are assured to be on a path to clinical recurrence, yet early enough that waiting for treatment does no oncological harm. Kang et al.conducted a retrospective analysis of data from 247 patients treated at UCLA between 1991 and 2013 who were found on post-op pathology to have aggressive disease characteristics — stage pT3-4 disease and/or positive surgical margins — and who received uPSA tests….

Kang et al. found that a uPSA ≥ 0.03 ng/ml was the optimal threshold value for predicting biochemical recurrence (BCR). Other findings included:

  • uPSA ≥ 0.03 ng/ml was the most important and reliable predictor of BCR. It predicted all relapses (no false negatives: no one was under-treated), and hardly ever predicted relapses incorrectly. Only 2 percent would be over-treated by waiting for this cut-off.
  • It was especially prognostic if found on the first uPSA test after surgery.
  • Even if the first uPSA test was undetectable, any subsequent test where uPSA ≥ 0.03 ng/ml predicted BCR.
  • Other lesser predictors of recurrence were pathologic Gleason grade, pathologic T stage, initial PSA before surgery, and surgical margin status.
  • At 5 years of follow-up, 46 percent of patients had a BCR using the “standard” PSA ≥ 0.2 definition, 76 percent using the PSA ≥ 0.03 definition.
  • Treating when an ultrasensitive PSA level reached 0.03 ng/ml gave a median lead time advantage of 18 months over waiting until PSA reached 0.2 ng/ml.
  • It was necessary to monitor PSA for at least 5 years post-op, and to test at least every 6 months.

That study used the histories of men with aggressive prostate cancer; mine was not.  I didn’t have positive margins and my tumor was classified T2c, so perhaps these findings are less applicable to me.  Still, the line:

Even if the first uPSA test was undetectable, any subsequent test where uPSA ≥ 0.03 ng/ml predicted BCR.

…is something that I definitely want to talk to the urologist about given that I’m at 0.05 ng/mL.  But I’m not going to get too worked up about it (I hope), because the Johns Hopkins study seemed to be broader in scope with less scary results.  However, both studies seem to indicate that the 0.03 ng/mL can be a threshold for predicting BCR.

On the other hand, Walsh writes:

Radiation also was not likely to help men who had negative surgical margins. “This is logical,” explains the Johns Hopkins radiation oncologist Danyy Y. Song, “because patients with negative margins whose PSA persists after surgery are more likely to have residual disease outside of the prostatic bed, as opposed to those whose margins were positive at surgery, where disease is likely to remain in the area.” (and thus can be targeted with radiation).

I had negative surgical margins, so this can take the discussion with the urologist in a entirely different direction.  Another question for the list.

I know that all this research in advance of the meeting with the urologist is a form of self-inflicted torture causing anxiety, frustration, and confusion. But I’d rather ensure that I’m knowledgeable than go into the meeting with my head in the sand. Knowledge is power.

The bottom line: I’m going to keep researching and learning (with a critical eye and more than a grain of salt).  If, in the end, I’m proven that I overreacted and had nothing to fear, then I’ll be happily embarrassed and a bit smarter about uPSAs and biochemical prostate cancer recurrence.

On the other hand, if God forbid, I do have to journey down the BCR path, I’ll be steps ahead of the game and can advocate for myself with my medical team.

Is it Tuesday yet???

image

Day 1,767 – A Few Rough Days

On By DanIn Emotional Aspects, Prostate CancerLeave a comment

Wow. I’m back to the reason I started this blog: If I don’t write, my head will explode. Really.

After my initial meltdown over discovering the change in my PSA reading a week ago today (last Saturday), I was cruising through the last week pretty well.  Sure, it was on my mind, but only peripherally.

Thursday night, however, the thought of an increasing PSA came barreling into the forefront of my consciousness like a runaway freight train careening down a mountainside.  And it stayed there.  All. Freakin’. Night. It remained there all day Friday, too, and well into the wee hours of this morning when my body finally pulled the plug on my brain and said, “Enough! Sleep!!”

I had a flashback to the early days of this experience where I was so overcome by thoughts that I actually went to the doctor, exhausted, asking for assistance in trying to get some sleep.  I thought, “No! Not again! I don’t want to go through this again!”

No matter how hard I tried to re-focus on anything other than increasing PSAs yesterday, I kept coming back to it over and over again. Technically, I never came back to it, because I never actually left the thoughts behind. They were a constant presence.

Nothing worked, so I figured I’d tackle it head-on by breaking out Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer and researching more so that I would be better prepared for my urologist appointment on Tuesday. I’m glad that I did; I’m a little smarter this morning than I was last night.

I know that I’m getting way, way, way ahead of the facts here, but I learned that I’d be a good candidate for salvage radiation therapy (SRT) given my Gleason of 7 and being more than three years out since the increase in PSA began.  The only unknown is the PSA doubling time.  Of course, just like everything with prostate cancer, there are multiple schools of thought as to whether and when SRT should start.

But I also learned that it can take up to 8 years on average after the first sign of a PSA increase for the cancer to metastasize to the point where it can show up on a scan someplace.

At this point, the logical, analytical side of me understands that having a PSA of 0.05 ng/mL is still considered to be undetectable, and there’s no reason to panic. I’m generally okay with the number. What I’m not okay with is the movement in the numbers.

I get that most doctors believe that biochemical recurrence doesn’t occur until the PSA hits 0.2 ng/mL, with others believing that it’s better to wait until it’s 0.4 ng/mL, so 0.05 ng/mL isn’t close to either of those numbers.

I also get that emotions are fickle and often trump logic in a big way, and that’s what made me the most frustrated this week–my inability to control my emotional reaction as I would like to.  I really, really don’t want to be going back to Days 19 -22 again. Really.  But that uncontrollable emotional roller coaster is all part of the wonderful experience we call cancer.  [Sarcasm.] I hate roller coasters.

Tuesday’s urologist appointment can’t come quickly enough. Things that I’ll be asking:

  • What does going from a reading of <0.03 ng/mL for over 4 years to a reading of 0.05 ng/mL at 4 years and 8 months mean to you?
  • How and when are we going to confirm that this was either a blip or a real change?
  • If it is a real change, what’s the plan going forward?

Standby for a few random posts in the days and weeks ahead as we navigate through this new chapter in my journey.

[Oh. I had to break out my spreadsheets to calculate what day of this journey today is.]

prostate-cancer-awareness-hero-806x307,0

 

 

Month 58 – Welcome to PSA Anxiety

On By DanIn Prostate Cancer1 Comment

prostate-cancer-awareness-hero-806x307,0Blindsided.

That’s how I was this morning (I’m writing this on 5 September) when I hopped online to check on my PSA results.

Ever since my surgery in January 2011, my post-surgery PSAs always came back as <0.03 ng/mL; this time, it came back at 0.05 ng/mL. Shocked, stunned, heart-wrenched, panicked.  Yep, that was me, and then some.

Because my appointment with my urologist isn’t until 15 September, I immediately began searching for information online about increasing PSA levels after prostatectomies to learn what this meant.  Of course, I know the big picture: If PSAs go too high, “It’s baaack!” But what about from <0.03 to 0.05?? Is that significant?  If so, how so?

The Prostate Cancer Foundation and Johns Hopkins came to my rescue and calmed some of my frayed nerves.  I’m breathing again.

In the PCF article, “The Role of PSA,” they reminded me:

After prostatectomy, the PSA drops to “undetectable levels,” typically given as < 0.05 or < 0.1, depending on the lab. This is effectively 0, but by definition we can never be certain that there isn’t something there that we’re just not picking up.

It’s good to know that 0.05 ng/mL was still considered to be undetectable, and that recurrence was defined:

In the post-prostatectomy setting, the most widely accepted definition of a recurrence is a PSA > 0.2 ng/mL that is seen to be rising on at least two separate occasions at least two weeks apart and measured by the same lab.

There’s no need for me to be in full panic mode at the moment, but that doesn’t mean that I’m not concerned.  The most disconcerting thing for me is that there was movement in the PSA reading and that this may be the beginning of an upward trend.  Or it may simply be a blip in the readings. I’m doing my best to not let emotions overtake facts.

Johns Hopkins has a great article about the topic that also helped me calm down after reading it:

On a technical level, in the laboratory, Chan trusts the sensitivity of assays down to 0. 1, or slightly less than that. “You cannot reliably detect such a small amount as 0.01,” he explains. “From day to day, the results could vary — it could be 0.03, or maybe even 0.05” — and these “analytical” variations may not mean a thing. “It’s important that we don’t assume anything or take action on a very low level of PSA. In routine practice, because of these analytical variations from day to day, if it’s less than 0. 1, we assume it’s the same as nondetectable, or zero.”

I’m really anxious to talk with my urologist about the plan going forward, and waiting the ten days between now and then will be difficult.

I would hope–and push–for another PSA test in a month or so and then, depending on its results, stepped up frequency of testing if it’s at 0.05 ng/mL or higher.  That, of course, will open the door to the wonderful world of PSA Anxiety: Test, wait, worry; test, wait, worry; test, wait, worry.

I remember how anxious I was going in for my first PSA test after the surgery and, over the last 4 years and 8 months, that anxiety dwindled.  For this week’s test, it was just a matter of routine.  I was excited to be able to call myself “cancer-free” just shy of the five year mark. Now this happened, calling that five year milestone into question (at least in my mind; perhaps not in that of my urologist).  Silly me.

I was hoping that the cancer cloud hanging over my head at this point was withering away to a thin, wispy little cirrus cloud.  Instead, this morning, I got this:

448d4-t-storm

Once cancer is introduced into your vocabulary, it’s there for good.  Period.

Month 37 – Value and Future of this Blog

On By DanIn Prostate Cancer, Social Aspects2 Comments

Finally.  November / “Movember” is over!

I’m glad to have supported the cause, but I’m even more glad to be rid of that itchy, two-toned beard and moustache!  (My moustache and the top half of my beard were a reddish-brown, and the rest was snow white.  Ugh.)

*     *     *

I have to admit that I’m struggling over what to write for this month’s update.

When I began this blog three years ago, it was meant to be an easy way for me to keep family and friends informed of what was happening immediately after the diagnosis.  I figured that I would let the decision be up to them to follow along, rather than me fill their email in-boxes with something they may not have felt comfortable reading.

Over time, the mission of this blog was to educate others about prostate cancer from the perspective of just one person who went through the diagnosis and one treatment option.

This blog served both purposes quite well.

But I always wanted the blog updates to bring something of value to its readers, and that’s where I’m beginning to stumble a little.

Is it of value to you to hear month after month that nothing has changed?  If it is, then I have no problem continuing monthly updates.  But if it’s not, then perhaps it’s time to shift to “as needed” updates–update the blog when I hear something in the news about prostate cancer that’s of interest, or if something changes significantly with my own status.

Perhaps I’ll let you, the readers, answer that question by completing the poll at the top right of this post.  Or, if there are specific things you’d like me to address in my monthly updates, leave a comment in the comment section below.

Don’t worry.  I can’t see myself abandoning the blog altogether or taking it down.  I’ve put to much energy and soul into keeping it going, plus I know that it’s been a good resource for some newly diagnosed guys along the way.

I’m open to your constructive comments and feedback.  What do you want to read about in these monthly updates?

 

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.”