The ways others react to news of your prostate cancer

Posted by johnt0707 @johnt0707, Jul 7 5:42pm

Wondering what kinds of comments/encouragements those with PC get when others learn of the disease -- or hear updates on your progress?
I've found most lean toward "You've got this!" and "Hang in there" with an occasional outlier like, "Well, if you have to get cancer, you've got the best one."
This group is a wonderful community of encouragers.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

After conversations with groups of cancer patients with many types of cancer, I realize that there is no right way to respond to another person's cancer.
Translate every expression every wish, every gesture into an expression of caring. No matter how awkward, irritating or even offensive and cloying, take only the good.
Many want to offer solutions, even ridiculous advice on how you could have avoided the cancer. Don't bother yourself thinking of a clever response, just say-- I appreciate your concern. And then appreciate their concern.
@johnt0707, how would you react when you learn of their disease -- or hear updates on their progress.

My cancer was rectal, and I never, never told anyone.

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@vancouverislandhiker

The people that get under my skin are the ones that say " well, no one dies of prostate cancer , so it no big deal " . Really ? this is their knowledge base ? More men each year die of PC each year than 'people' dies of Breast Cancer in NA ... but always gets less than 5% of the funding for research ! James on Vancouver Island.

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That's the same misguided group-think that had the CDC in the U.S. and health authorities around the world recommend stopping routine PSA screening from age 50. They ignored the early, aggressive types of prostate cancer where early screening could save lives, and talked only about avoiding unnecessary interventions for early-stage PCa in very elderly patients. 😔

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Thanks to everyone for their feedback. It's tough to "read" your audience just as it's tough sometimes to read your doctor.
Some treat information like an inoculation -- only if I must know. Some appreciate the education -- no, you don't treat thyroid as you do prostate. No, I'm not contagious. I was a union leader when AIDS first hit. Getting information -- and then agreeing to hear and understand it -- was no easy task.
I live in a retirement community. Everyone hurts, most don't share. But we all need help -- or to be helpers on knowing of need. The old "need to know."
Glad the Mayo Clinic enables this dialogue, and thanks again.

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I saw this post earlier and it forced me to revisit when I got "the call" in December 2023. As I was undergoing the MRI and biopsy, I had told a few close friends and family members it could be PCa or something else. But, I had already presumed I had PCa given my 14.7 PSA and the MRI flagged with a 5. After I got the call, I texted these close friends and family members with the news, and I was overwhelmed at how many actually called me in response.

And then I did something out of character for me, I posted about the diagnosis on Facebook to help raise awareness. The reactions were surprisingly supportive. A lot of guys messaged me privately and asked for more details, how testing worked, etc. I was somewhat gratified by the responses.

As my journey progressed, I posted about receiving my ADT/Eligard shot on Valentine's Day, no less. I posted when had Space Oar and fiducial markers implanted. And I posted as I underwent and completed five fractions of SBRT (TrueBeam STX) in May. I know a few younger guys have gotten tested, based on family history, etc. and I feel free to talk to guys about the importance of testing and awareness, since no real protocols/standards exist for testing, etc. among many PCPs.

And I really stress the importance of advocating for yourself, since the US healthcare industry is a complex mess. I was fortunate that my PCa was only discovered after my now-former PCP was on vacay and their replacement, fresh out of residency, ordered my very first PSA test when I was 58. But for that twist of fate, I would probably be ignorant about the cancer that was growing inside me. Take care and warrior on everyone.

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Reading this thread causes me to reflect on how this is going now, 3 years into my (known) cancer journey. I am tired of people looking at me with a knowing look and asking, "How ARE you doing?" The reality is that I'm dealing with an uncertainty and risk I wasn't aware of before, and in spite of all the encouraging things people say, as best I can figure out I still have about 75% chances of recurrence and more rounds in the journey [to death!] This has significantly changed my outlook on life and the knowing looks usually have very little to do with where I am at in my own journey.
Of course I am grateful that there is no current evidence the cancer is progressing. This was also true in the years from approximately 42--65 when I first had (barely) elevated levels of PSA (3-4) until they were more than doubled (8-10) and then the first MRI found a nodule, then a second MRI (with better equipment and pathologists) found a (turned out to be worse) nodule, the guided biopsy confirmed, etc.
I am a committed Christ follower and I find Christians appear just as prone to be looking for "magic" as pagans, and that sort of faith is not inspiring to me. I believe I need to trust God simply because that's the way the life is, not because I selected the best God out there and that God is going to work magic at my request or command. I understand that your perspective may be (and likely is) different. This is NOT about persuading you, but about explaining how I'm experiencing people's reactions.

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Like others, the reaction to my PC has been all over the place ranging from "you'll be fine" to "I heard if you do xyz they can cure you", etc. I smile and move on ... they mean well.

Early on after surgery and radiation, Mayo Clinic reached out to me and asked if I wanted to meet with a psychiatrist or some mental health physician (not sure what her title was). I said, okay.

The appointment begins with her introducing herself and continues with a lot of data; things I should do; ways to think about it; etc.

After a few minutes ... she stops ... looks at me and says ... "you seem to have your head screwed on straight and have no interest in what I'm saying" (said nicely). I respond with something like "bingo!"

The moral here is: Living with PC is not only the medical treatment but also your mental health and how you see yourself.

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Spino,
thank you for this thoughtful prose.
Christians like miracles.

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@tehill

Like others, the reaction to my PC has been all over the place ranging from "you'll be fine" to "I heard if you do xyz they can cure you", etc. I smile and move on ... they mean well.

Early on after surgery and radiation, Mayo Clinic reached out to me and asked if I wanted to meet with a psychiatrist or some mental health physician (not sure what her title was). I said, okay.

The appointment begins with her introducing herself and continues with a lot of data; things I should do; ways to think about it; etc.

After a few minutes ... she stops ... looks at me and says ... "you seem to have your head screwed on straight and have no interest in what I'm saying" (said nicely). I respond with something like "bingo!"

The moral here is: Living with PC is not only the medical treatment but also your mental health and how you see yourself.

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tehill, I asked for a physiatrist. They called in a psysciatrist. Neither of us knew for the first half hour.

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I pretty much also get what most have described here in terms of questions and encouragement. I am appreciative that the friend or family member care enough to ask. If they are 40 or older I will ask them if they include a psa test in their blood test. If they shut the conversation down at that point, that works, and if they don’t because they are curious, then I encourage them with some basic information about my experience and the importance of keeping track of their psa levels.

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@bens1

I pretty much also get what most have described here in terms of questions and encouragement. I am appreciative that the friend or family member care enough to ask. If they are 40 or older I will ask them if they include a psa test in their blood test. If they shut the conversation down at that point, that works, and if they don’t because they are curious, then I encourage them with some basic information about my experience and the importance of keeping track of their psa levels.

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Your encouragement on PSA checks for "younger" men is critical, and thank you for that. I was in a urologist's office maybe a dozen years ago when various medical groups (and payers) dismissed the value of PSAs -- likely delaying the discovery of my PC. Sure, we need more accurate tests. In the meantime, make good use of the imperfect tools we have.

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