In a recent thread, an off-topic conversation started that deserves discussion. Specifically, whether or not I, or you, or anyone else having an unfortunate medical condition, should go public with that information.
Let me introduce myself. My name is Cary Jensen, and I was diagnosed with prostate cancer on December 22nd, 2017. I joined this group about three months ago, but this is my first post. And with this post I want to share some of my observations and experiences, with specific attention to the public vs. private conversation.
But before I do that, I think it meaningful to share with you my situation. Due to an out-of-range PSA of 6.9 (yeah, I know, it’s not that high) during my annual checkup with my primary care physician, I was recommended to a urologist for a biopsy. Of the twelve samples taken, four of them showed cancer. Most were +2+2, but one was +3+4. At the time I was 58 years old, and I opted for a radical prostatectomy.
I had the surgery nine weeks later, giving me ample time to recover from the biopsy. The lab report that came back revealed that the cancer was contained within the prostate, and that only five percent was affected. However, the cancer rated a +4+3 on the Gleason scale, which as many of you know, is not good (nor is it desperately awful).
Within a week of the surgery, I developed a devastating case of AFib (atrial fibrillation), which was probably caused by the three pulmonary embolisms (blood clots) they detected in my left lung at that time. I’ll spare you the details, but the AFib persisted and I had an ablation this past fall, which seems to have solved that particular problem.
Following my surgery, I had the obligatory PSA tests every three months. The first two returned a result of “undetectable.” But the one I had this past October returned a PSA of .20. My urologist asked me to take another, ultra-sensitive PSA test a couple of weeks later, and it returned a PSA of .141. The cancer had spread.
My urologist said that the cancer was probably microscopic. A full body bone scan and a 3T (the T stands for Tesla) MRI (magnetic resonance imaging) revealed no detectable tumors, so we attacked the cancer aggressively. Within three weeks I had received a 6-month Lupron Depot injection (ADT), and started a radiation treatment schedule. I had 25 sessions of IMRT (intensity modulated radiation therapy) at a total dose of 4,500 cGy to both the prostate bed as well as the surrounding lymph nodes, and a final 13 sessions of IMRT at total dose of 2,340 cGy to just the prostate bed. That ended about six weeks ago.
Now, back to the point of this post, to go public or not. I’ve thought about this a lot, which is why I am sharing my experience with you all. And, having said that, I understand that each of us have different circumstances, and there may be important factors that influence your decision about whether you should be open about your condition or not. I made my decision, and I recognize that it’s not appropriate for everyone. So, I will not judge, and I am not making a recommendation. We each have to make this decision for ourselves.
Upon receiving my initial diagnosis, I decided that there were some people who needed to know, and some people that I wanted to know. The people who needed to know, in my case, were my immediate family (my wife was involved in this from the start, and she was with me during my initial discussion with my urologist following my biopsy, so she was already in the loop). I am also an avid dancer, and I decided that my immediate dance community should be aware, since I anticipated that my upcoming surgery might keep me off the floor for some time. I didn’t want them to speculate.
I also informed my close friends and my current clients (I am a consultant, and my wife and I have had our own business for over thirty years).
So, there were quite a few people who were aware of my situation, and I received a great deal of support from them. This was helpful. I didn’t have to bear the burden alone.
In the months following the surgery, I made the decision to go public with my situation. And here is where things get interesting. I am well known in a very narrow area of software development. I have published a couple dozen books on software development, written numerous magazine articles, and have spoken at hundreds of conferences. I also have thousands of twitter followers (it is a narrow area indeed). I reasoned that software developers, in general, are a pretty arrogant bunch, and many of them think they are super human. As a result, a fair percentage probably don’t get annual physicals. I know some who haven’t been to a doctor in decades. I thought that, due to my reach, I should stand up and say “get an annual physical, it might save your life.”
But I was waiting for the right time. And, I realized, that it might have an impact on my career. So I procrastinated some. I shared my intentions with some of my closer colleagues, and they said they thought it would be a good idea, but still I waited, almost ten months.
It wasn’t until I received the diagnosis that the cancer had recurred that I went ahead with the decision to go public. I admit, it kind of sent a mixed message. Originally I wanted to say “Get an annual checkup, it might catch a serious condition early. And, if you notice something unusual, get it checked out. My annual checkup found cancer, and now I am cancer free.” But now my message was 1) get annual checkups. 2) monitor your health, and 3) my cancer is back. Uhhgg.
Oh well, but I did it anyway. I posted a message on my blog, which, if you are interested, you can read at caryjensen.blogspot.com/201... . I also tweeted about this, and also published a message on my personal Facebook pages. My thinking was this: If I can convince some readers to start a program of annual checkups, and at least one catches a serious condition early enough to make a difference, it would be worth it.
But would there be consequences for me, for going public? Well, fortunately I didn’t have to worry about that. I am pretty close to the end of my career, and, I figured, that if a potential client would use the knowledge of my journey as a reason to not engage my services, I probably wouldn’t want to work for them anyway.
So, the next question is: Did I experience any negative repercussions from going public? And I would say “Yes.” It was minor. One of my clients, who had asked me to provide consulting services in early 2019, would no longer return my emails. And people in my neighborhood would remark “Wow, you look fine. I can’t believe you’re going through radiation therapy.” I thought that that was funny, and wrote “what did they expect, that I’d be hunched over and bleeding through the nose?”
Oh, yes, I did write about it. I set up a Facebook page where I shared my experiences, contemporaneously. (Again, if you are interested, feel free to check out facebook.com/CaryOnUpdates .) That was so much easier than writing emails that I would blast out to the many people who asked to be kept up-to-date. Some, I figured, would tire of my constant updates. By putting it on Facebook, it would be their choice to either following along or ignore. Problem solved.
Next question is: Did I experience positive effects of going public. And the answer to this question is an unqualified “Yes.” I received support not only from my closer friends, but from people I had interacted with over the years in my professional community, people who had been affected by one of my classes or one of my magazine articles or books, and some of whom I never really met. And, as I mentioned above, if there was a chance that I might have influenced someone to look after their health just a bit more, I would accept that as a success.
So, I leave you all with this. Yes, going public can have a negative impact, as there are those who will judge you. But by sharing your situation, you may not only get additional support, but you may also spur others to take a closer look at their own health.
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Being a (now mostly retired) computer programmer myself and an independent consultant since 1983, I had to check out your books on Amazon and your website. It looks like you're pretty good at your job. Congratulations on your career.
Your cancer diagnosis and treatment was unconventional. With a biopsy PSA less than 6, it was surprising that anyone would even be willing to perform a prostatectomy. But then to find out it was actually 4+3 and, worse, the operation resulted in embolisms (they probably told you that the embolisms had nothing to do with the surgery, right?), and worse still, it didn't cure the cancer - I don't know how much worse luck you could have. Hopefully the radiation will have done the trick.
As to the question of going public, my view is that, for me at least, the benefits greatly outweighed any negative effects. I went back on the job the day after I got my biopsy results and told my co-workers that I had cancer. I found that my statement made a lot of people uncomfortable so I talked openly about it and that made them feel more comfortable about asking me questions and discussing it with me. For myself, it also made me feel that I was not alone. My friends knew my diagnosis and supported me. I didn't withdraw from them and they didn't withdraw from me. I never felt that I was sitting on some dark secret.
Thanks, Alan. To answer the question, only the surgeon questioned whether the pulmonary embolisms where an aftereffect of the surgery, but he eventually came around to the conclusion that it probably was.
Thank you also for your sharing of your experience with being open about your diagnosis. It's a big deal, and I am sure that you had a much better experience having shared your situation rather than hiding it. Again, I acknowledge that this is a very personal decision. There is no correct approach.
I left out something from my story that is probably significant though I wasn't thinking about it when I wrote my reply. At the time of my diagnosis I was working as a computer programming contractor at the National Cancer Institute. The programmers were like computer nerds everywhere. We were programming for cancer information websites, but could equally well have been working on programming cigarette vending machines. I think most of us appreciated that the work we were doing was good for the community but, as one of the programmers, I too had an "it's all ones and zeroes" mindset and I thought about my work from the point of view of algorithms and systems designs.
The users, however, were all involved in the cancer side of cancer information and I think I knew I could count on their sympathy and understanding.
My treatment was successful and I've had no more treatment in 15 years, but it was my diagnosis and treatment that made me think a lot more deeply about the work I was doing in cancer information processing and led me to working in online forums like this one to try to help others.
I'm retired now but I can remember the nights I worked until suddenly the screen blurred and I knew I had hit the wall and it was time to go to bed. Programming can be a pretty compelling activity.
CaryOn, On the back of the very positive and insightful things Alan Myer said above, I congratulate you on having the courage to be open about your condition. I come from a family with multi-generational cancers (of many different types?). So maybe it came easier for me to be open about my cancers. (I also have a second one that I have lived with for 12+ years, so PCa was not my first encounter with the big C.) I have also seen first hand the often heartbreaking effects that cancer can cause, as well as the courageous efforts that people expend in battling both the disease and the short/long-term effects of treatments.
With that in mind, I find that being as open as possible about the nature of the disease is a very good thing for us, as patients, as well as for our families, friends, co-workers, and the at-large public. I feel good when I see a breast cancer patient proudly showing her bald head vs wearing a wig to conceal it. I don't believe there is much personal or societal value in closeting our disease and pretending that our lives are unaffected. Only by facing up to the nature and extent of cancer will we ever hope to get the upper hand and get the cures we so badly need. If any of our actions to share our experiences gets just one person to treatment in time for a curative treatment, then that is one life saved. Seems like a pretty good ROI to me.
Thanks for sharing your story. Continued Good Health to You & Be Well - cujoe
I went public in Feb 2015 (Dx in 01/2015 with PSA at 840, GL 7, Stage IV) at the Surf City marathon - I had a sign saying: "Advanced prostate cancer. Chemo starts next week Guys get checked" I've had signs since then at 30 subsequent marathons and now I'm honoring those men who were take by damn PCa (a few from this forum). Yes, it is a personal decision, but I hope that someone out there got screened because they saw my sign and his life was spared what I went (and still) going through. Fight on Brothers blog.athlinks.com/2017/05/1...
Very little to add here, so i’ll Keep it short. First, congratulations on having the sense to seek aggressive treatment. Not everyone does.
Going public can be so satisfying. Having this disease is a uniquely solitary experience, so the more support you can surround yourself with, the less lonely it will feel. For me there was also a pay it forward element. I’ve learned a lot from some people here, who give generously of their time and expertise. Sharing with others is the human thing to do, so I have offered to do and started doing informal, lay counseling in my workplace.
My only negative experience came with my ophthalmologist. When I explained I had delayed cataract surgery until I completed Chemo, she said, “and now they’ve taken away your hormones - how sad.”
Consider initiating a local Prostate Cancer Support Group, which of course you should moderate. You much to offer participants. There are members of this community, like Tall_Allen, who could provide insights into how this is accomplished.
I started a Support Group through my church here in the Tampa suburbs. I use meetup.com to create public awareness.
You are also the person to write a book on the "how-to..." of support groups.
Malecare runs support groups. If you are interested in starting one, you might also try contacting Darryl Mittledorf, our forum administrator and director of Malecare.
I have Stage 4 and am just now starting treatment with Casodex + Lupron + Xgeva + Zytiga + Prednisone. I have told my wife. But so far, I haven't told anyone else. And, tentatively, I don't intend to tell anyone else until the effects of my illness or medications become evident.
Here is my reasoning: If I disclose my illness, friends and family will start treating me different. For lack of a better word, they will start to patronize me. And I'm sure that awkward interactions will leave well-meaning but uninformed friends embarrassed and feeling bad. Jane: "Well I hope your medications knock that thing out fast!" Me: "Actually, Jane, my medications are to prolong my life, but they aren't intended to cure anything." Bill: " My neighbor elected to have prostate surgery, and his doctor says he's cancer free now." Me: "Bill, that's great, and I suspect his cancer wasn't Stage 4."
I'm open to changing my mind on this. Share you experience or opinion with me and I promise to read and consider it.
I am so sorry to hear about your situation. I also want to apologize that I cannot suggest how you should proceed. Whether to go public or not is a very personal decision, and there is no correct answer.
I have a friend who has prostate cancer, and he has decided to tell no one, for the same reason that you have expressed. He knows that people will treat him differently. And, yes, they will. Patronizing? Maybe, but I really haven’t felt that I’ve been treated that way by anyone. But some people, including those who really love you, will treat you differently. And in many cases, that “different” will include love, caring, and support.
I think that the things you fear do indeed happen. When people learn that you have a potentially fatal illness they don't know what to say. I remember from before I was diagnosed that I learned that a colleague had colon cancer. I never spoke to him again because I didn't know whether he would be upset by my talking or resent me for being healthy, or what. He died of his cancer and I felt bad that I had never said anything to him about it before then.
I didn't want that to happen with my friends. So I took the initiative, not only to tell them I had cancer, but to talk openly about it to them so that they would feel comfortable about talking about it to me. I think it worked for me and for them.
But it's a big step. As Cary said, it's something at each person has to figure out for himself.
Funny you post this, i experienced some regret this weekend about sharing my cancer with a neighbor lady, she saw me after a while and acted surprised to see me, she said and i quote, i thought you would be dead by now. Very stupid and insensitive. I have also become a advocate on social media about annual check ups specifically prostate cancer, a female friend from high school said she got a early mammogram and caught her cancer early. I lost some business from a client a couple years ago they didnt want to burden me with my typical workload. Let me make that decision i need to make living while i can. Its been a double edge sword. Most people dont wanna know about it because it reminds them of their own mortality
Thank you for your reply. In particular, I agree that going public is a double-edged sword. There are benefits, and there is a possibility of deficits. I am cheered to hear that you are an advocate on social media. Take care, my fellow journeyman.
1961 was a great year... exactly right , people don’t want to be reminded of their own mortality .. especially men ... almost everyone thought me dead too... live now ...
The only negative I’ve had with telling friends, is that a couple want to know every little detail about treatment, like how often do you get hormone shots, does it hurt, etc. I just say, “I’m fine, I’ll talk about it more about it after it’s over with.”
Good point. A dear friend of mine who underwent gender reassignment said "I am not comfortable sharing the details of my treatment." Please feel free to use this phrase.
I find my mortality, in particular my cheerfulness, can be off-putting to some so I try to respect those folks. I also found the dying to be a secret minority in society, a group one has joined. We’re like others but also different. Some things even our closest intimates still won’t understand, not because they refuse to but because the odds are against it. It’s an existential paradigm shift. That can get problematic but it helps if one adopts the exquisite good manners of the dying, IMO.
That’s one of the great things about having the time to die, as opposed to a sudden death, you get bathed in a vast glow of love. People let you know you were nicer than you thought you were. There are many really wonderful things about dying. That’s just about the last taboo I face: dying and being happy, who can you say that to. I don’t wanna die, but i’ll Take my lumps like anybody else, i’m Not special, but if there’s fun to be had while dying, especially any exquisite pleasures only the dying can know, I want that. I want that out the ying yang. I believe it my right. Only question is how to say that without offending or hurting people.
My feeling: always tell family & friends; never tell work colleagues.
Family & friends will support you; management will regard you as damaged goods when they hear the word 'cancer' - can affect the projects you get, raises & promotions, IMO.
I told my immediate family and they told everyone. It was strange how people reacted to the news. At first everyone was so supportive, but after a while it got to be too much. It sounds mean but I had to tell them to back off. It got too hard to make everyone feel good about what was happening to me. I just wanted things to be normal again or as close as possible. I preferred people asking question instead of dancing around the issues. There is so much bad information out there I try to correct or update as much as possible.
There are a lot of people that get very uncomfortable being around sick people. They will be polite and ask about how you feel but their eyes glass over as soon as you start talking. Since the beginning it been strange how people react to my illness. I too don’t look like a cancer patient. I really get a kick when I see the look of disappoint when they see me. I have found that most people are happy with me saying things are good today. If they ask two or three question then I tell them what is happening. If word gets out be prepared for how strange things will get. All I wanted was for things to be normal but there is a new normal now. Good Luck and stay sane.
I think my experience echoes what the other men have written. There is another POSITIVE CONSIDERATION: PCa lurks in the shadows and the more like we shine light on it, the better we educate our sons and grandsons about taking care of themselves and being responsible for getting DRE as part of their health screens. Males have a 100% chance of getting prostate cancer if they live long enough but we do not have to die from it. Education and assuming responsibility for our health can prevent much of that. But if PCa remains a dirty dark secret, we fail.
I no longer have PCa. It seems you are doing better than average. I was on Lupron (Eligard - generic) for 6 1/2 years. Over 11 years I have had 72 radiations. I have A-fib, a heart stint, severe diabetes, kidney disease stage 4, and urinary incontinence. I am taking 17 medications daily including two blood thinners, so I bleed all the time. I am 73 years old and a retired pharmacist. But I no longer have PCa! I had given up all hope of surviving 2 years ago. but here I am! Never give up and understand that the more information you ask about is the way to recovery. I was manager of a pharmacy having worked there for 19 years and they fired me because I am gay. At 20 years you get retirement. So I got a better job with better hours and then the old company bought out my new company. I worked there for 1 year, got my retirement and quit. So life is never X + Y = Z. We can not always predict the future, and I wish you well.
They stopped checking my PSA at age 70 - just when the PSA was starting to go up. So my cancer could have been caught - and should have been caught - when it was still possible to do something about it. So I am on a crusade - get your PSA checked and don't let them stop. I tell everybody because I don't want them to be like me - not diagnosed until I was Gleason 9, stage 4.
Greeting and Caryon (British movie series). Anyway, I've told everyone about my Pca and no negative reactions. But when I told them I had herpes...The shit hit the fan....👀
Ok, you win. Biggest laugh of day. I do remember awkward moment telling wife to be, "You know, I had a very satisfying massage before I met you, and you may want to get checked out for venereal disease." A Day On The Green, Oakland, Ca, 1976. A year I wish I could remember.
Day on the Green was a recurring concert in Oakland, California, presented by promoter Bill Graham and his company Bill Graham Presents. Held at the Oakland Coliseum, these events began in 1973 and continued into the early 1990s. The last Day on the Green overseen by Graham took place the same month as his death in a helicopter crash in 1991. There was a series of Day on the Green shows the following year in the wake of Graham's death and there were other shows in 1994-97 at the Oakland Coliseum Stadium - namely U2, Pink Floyd, and the Rolling Stones.
Remember Peter Frampton well in Oakland. Not too many years ago I mentioned to wife that I really wished I had seen Fleetwood Mac in concert. She looked at me with maybe pity in her eyes and said. "Mr. Monte, you saw them in Oakland, Day on the Green." Good thing concert tickets were cheap then, have no memory of them. Enjoy. (Excuse: I was 26 and flying high in my taxi.)
Well, there's a reason why we don't remember. You, like me, were probably in line while it was still dark. I won't go further, but I think you know what I'm saying
One of my great regrets in life was missing a Pink Floyd concert at the Oakland Arena (next door to the Coliseum). I think the year was 1980, and Roger was still in the band. Don't have regrets. Grab the gold ring and be in the moment.
Day on the Green? Oh, wow! I went to one of those at the Oakland Coliseum. Boston was the top bill, but Sammy Hagar was second bill, and we wouldn't let him get off stage. Good heavens! What a trip. It was 1978. Thanks for the memories
I have some public presence, use Caring Bridge caringbridge.org/ , more limited than FaceBook, everyone on list receives e-mail when I do an update. Have strong Christrian faith in each update I cover how I a doing Spiritually, physically and emotionally.
I've told family and friends but that's it. It's just an awkward subject for me and I don't want to seem like I am soliciting sympathy. BTW, I am a mostly retired engineer (EE) and I've done system design, circuit design, and software design. I am aware of the altruistic option of sounding the warning to men who likely don't understand the need for annual screening, so there's that.
Good point. There have been times when I've shared my situation with someone outside my immediate group, for instance, when I've asked my airline to provide me extra services, and I've said "I don't mean to pull the pity card, because I am not pitiful".
I concur with your thoughts - well said. People who receive a cancer diagnosis and undergo therapy have no choice but to "live with cancer". About a year ago I was listening to a talk show here in Canada , when I was struck by the comments of a man who talked about his experience with cancer. He said that he had chosen to live with cancer and that life was rewarding, although more challenging. I felt the same, nevertheless it was very important to hear another person say the same thing - it was very affirming.
As people who are afflicted with cancer, we are still members of families, friendships, work places and society in general. We do not become shunned or pariahs but examples for others to understand that we have courage and life continues. I set up a small internal blog for family members and friends who wanted updates. It kept everyone abreast of my progress and also gave me the opportunity to put thoughts of all kinds to paper - the writing was very therapeutic and helped with recovery after chemo. I decided very early in my journey to be open about my diagnosis and prognosis. I have found that some people are more concerned about my health and ability to perform physical tasks. They also often say that I look great considering my situation, but I don't let these comments bother me - people are trying to be respectful and considerate. In general the support and understanding that I have received has been very good and I lead a fairly normal, but more productive, life. For as long as it lasts. Cheers, Phil
I’ll bet the guy that doesn’t return your emails anymore got his prostate checked.
Great thoughts, thanks for sharing. I'm also considering the same dilemma. Initially, when diagnosed I was really enthusiastic and wanted to go open and help guys to bring attention to the problem and do an early screening. I was diagnosed at 47 with highly aggressive stage 4, just because I was outside of the regular screening age window. I really wanted to help to get the warning message out and help guys avoid such mistakes. I'm also a software consultant, working with many clients, travelling a lot, building a business. So thought it might make a negative impact but the positives would outweigh. Then as the treatment progressed and I became to feel better, these thoughts faded away, lost their urgency and priority. I started working more and more basically returning to normal life. And now this thing about going public, helping others and even running some initiatives is somewhere on the background. I don't know why it is so, but I think it might be out of fear. And perhaps some laziness to make this extra effort.
I also found an interesting effect this information makes on people. A lot of not so close friends and acquaintances sort of pull away from you as soon as they learn about your condition. It certainly like they don't want to communicate, avoid you and generally act detached and cold. I don't know if you experienced that, but that's just my observation.
Yes. I have seen some people pull away after learning about my condition, but they've been a minority. Most of what I've seen is love and support.
I hope that your condition is now manageable, and that you experience great health. Illegitimi non carborundum. That's Latin. Don't let the bastards grind you down.
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