Tag Archives: internet

Changing States: Does a Blog Disappear?

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“Our patients lives and identities may be in our hands, yet death always wins. Even if you are perfect, the world isn’t. The secret is to know that the deck is stacked, that you will lose, that your hands or judgment will slip, and yet struggle to win for your patients. You can’t ever reach perfection, but you can believe in an asymptote toward which you are ceaselessly striving.” -Paul Kalanithi in “When Breath Becomes Air“.

This week, after considerable thought and with great ambivalence, I began saying goodbye to my patients. I have intentionally made my “retirement” a prolonged process, stretching back nearly 15 years and beginning with turning my research laboratory over to a wonderful trainee/fellow, Tom Flaig (now Vice Chancellor for Research at CU). I began to stop writing grants (for the most part), working more in the clinic on other people’s ideas, and continuing to write this blog while serving on various boards and IDMC panels (including with the two authors of that IDMC link). Eventually, I reduced my clinic time to one day/week, focusing entirely on prostate cancer and seeing patients only at our outreach site, the Shaw Cancer Center in Vail. But, as I anticipate turning 75 this summer, and as my wife has pointed out, “no one really wants an ‘over the hill’ physician” (even if that doctor is still doing well by his/her patients). It is time to leave the clinic. As Kalanithi points out, inevitably “your hands or judgment will slip”. And even if they haven’t or never do, I believe there is joy and elegance in stepping aside at the right time to provide opportunities for younger physicians to take your place and to the extent they wish, offer advice (wisdom?) if needed.

But what to do with a blog?? As an early adopter, I had great satisfaction helping ASCO develop its website, www.ASCO.org and wrote about what I envisioned as the evolution of internet oncology in this article. My colleagues and I assisted in moving much of the society’s print media online as well as hosting what I think may have been one of the first “virtual meetings” of a medical society in 1995. With the help of a contractor, we digitized 35mm slides, recorded audio, then merged them “by hand” and posted presentations on the internet (within hours of their live presentation) for viewing around the world. Shortly thereafter, I was invited to write medical blogs, and when that effort became commercialized with ads, I elected to start writing this blog “commercial free”. As the internet technology continued to evolve with the evolution of social media (twitter, instagram, tiktok, etc.) I opted out, and so this blog is all that remains of my “brief but spectacular” foray into content creation for the digital world.

The statistics on 733 subscribers to this blog suggest that relatively few visit the website, although I suspect more read the essays themselves which are sent out by the site as emails. Here are the stats for the last quarter:

The way you got this email (or link if you are reading on the wordpress site) is “push technology”. You opted in/subscribed to receive the emails. This led me to wonder what happens to an email or blog when you change pages or “delete”. We all know that they stay somewhere “forever”. I know this means bits and bytes on some server. But when I tried to think about it in Kalanithi terms to title this essay, I tried to imagine “When Pixels Become Electrons” or something similar. I failed. Here is how pixels work and this is how electrons control them. What happens to blogs is still mysterious to me, but I’m switching formats to “pull technology”: responding to queries/ideas rather than guessing what you might want.

There are now numerous online sources for prostate cancer information. If you want excellent push technology to keep you up, I recommend subscribing to “The Prostate Cancer Daily” written by and for experts in the field. If you want to look something up, like the latest clinical trials, please read this blog I previously posted.

Thus…I have decided to change states – just like the LCD crystals that change the polarization of the pixels that have turned black to provide you this text. Going forward, I will use this blog to try and help patients/families only IF they want, by responding to questions, but not by trying to guess what subjects may be of interest and creating a post. I am happy to do whatever research is necessary to explain advances and comment on the science behind them if you send a topic or question to me at prost8blog@gmail.com. I will post monthly answers here as essays on www.prost8blog.com so everyone can see them who is a subscriber. The person(s) who submit questions/ideas (if any) will remain anonymous and I will NOT provide case specific advice. I will also not send return emails from the gmail account except to indicate I have received your request/idea.

BOTTOM LINE: This will be the last post on this blog unless I receive a topic request or question at prost8blog@gmail.com. I will monitor that email site on a monthly basis and post here as needed. I have loved being a part of helping prostate cancer patients/families and wish the best to all of you who have subscribed. If the new approach works, great! And if not, I thank you (and your computer pixels) for sharing some of our lives together. Godspeed…


Filed under General Prostate Cancer Issues

[How to] Choose Your Own Adventure

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Back when Al Gore and I invented the internet (just kidding…but it does seem like a long time ago – before twitter, instagram, and all the rest), I had the privilege of helping my professional society create its first website, ASCO Online. As part of that effort, I wrote an introductory article to assist my colleagues in understanding what I felt lay in the future. In addition to trying to explain how browsers and the internet worked (as an amateur early adopter), I stated, “Oncologists will increasingly act as information guides rather than information resources for patients and their families with cancer.”

Herein, I will attempt to make that easier for you if you have a personal interest in prostate cancer. There are now more than 103 million “hits” in a google search for “prostate cancer”. Therefore, first understand your condition. If you are thinking about screening, put that in your search term, or read this article I selected for you.

Next, be familiar with the myriad of terms that have evolved to describe different situations (“states”, “stages”, “conditions” etc.) to describe the disease. “Localized” means you have prostate cancer that is felt to be (or even proven to be after surgery) confined to the prostate. If localized, is it high risk, intermediate risk, or low risk? Your physician should be able to help you understand this based on the Gleason score, pathology findings, and PSA, but there are now multiple molecular tests that can be done to help further characterize what has been found. There is an excellent article to help you understand these here. If you haven’t had surgery or radiation, and are just deciding what to do, some of these tests can be done on your biopsy. I once wrote a blog about the challenging decision of choosing a method of primary treatment that is still relevant here.

However to be really up to date, you may wish to look at the research going on for any of the more advanced prostate cancer conditions. For this, you should become familiar with and use the NIH website, Clinicaltrials.gov. To help you with this, I have done some preliminary searches for different conditions, but recognize that the terms you enter change what you see, so regard this as just a start. Pick your condition, and click on it and you will find some trials that are ongoing (I preselected “recruiting”) for some common situations. If you don’t see your situation, play with the search terms yourself.

High risk after surgery based on pathology
Rising PSA (biochemical failure) after surgery or radiation
Known metastatic disease (spread to bones or nodes on scans) never previously treated
Rising PSA or new metastases on scans while on hormone therapy

Now, taking the last example which gave links to 160 studies, you can narrow the search results by using the pull down menu on the search screen, starting with country. Note that limiting to the U.S. drops the available trials from 160 to 93. Adding the state, Colorado, drops it to 14 studies, etc. Maybe you have a relative in a certain city or state you could visit if a trial fits your situation. If you would like to look only at immunotherapy trials, try entering the term, “immunotherapy”.

Next, let’s go further into one trial. Let’s say we are interested in the NIH immunotherapy trial being conducted at the NCI. If you scroll down, you can see what will be involved:

Screen Shot 2019-10-05 at 12.48.14 PM

Next, since the devil is in the details, you need to know if you are eligible for this trial. Continue to scroll down to the Eligibility Criteria section. Here you find what clinical conditions you MUST have (Inclusion Criteria) or MUST NOT have (Exclusion Criteria).

At this point, you should understand how it would be almost impossible for your physician to stay up on all of the trials. YOU are now the “information guide” and if you are interested in whether a certain trial (or even an approach you have found that might be something you could do outside of a trial) could be useful in your case, you should make an appointment to speak with your doctor about the trial/approach. Recognize that this will probably take more time than your “usual visit” and notify the clinic you will want extra time to discuss this. Print out the relative parts of the trial so you can show it to her/him, and ideally have your meeting in an exam room with an internet-connected computer so you can search through details together. If there are questions, each trial has the phone number for a contact person (typically a research nurse), and since your physician may be able to answer questions you would have trouble finding in your record, this phone call is best made together from the exam room.

In our fast-moving, internet-enabled era of medicine, this is how I think medicine should be practiced. The shared burden of “keeping up” means the patient has to do his (no women have prostate cancer) or her (if you are a supportive spouse or similar) own research, help the doctor, and work on approaches as a team. Being respectful of the time involved is critical, but it CAN work. And it is much more rewarding than keeping up with tweet storms!! And if this is “not for you”, find a grandchild and choose some different adventures here. (disclaimer: I have never done this, but looks like it could be fun)









Filed under General Prostate Cancer Issues, Prostate cancer therapy, Uncategorized