Survivor guilt (?)

Posted by northoftheborder @northoftheborder, 3 days ago

I was in a critical medical condition in 2021: besides a de-novo stage 4 prostate-cancer diagnosis (and the expectation that I'd live only a small number more years, some of them very sick), I had a cascade of other serious medical issues.

Since then, a younger, healthy member of the extended family (by marriage) passed away in a sudden freak accident; my childhood friend died when his lymphoma from 20 years ago came back; and I just heard that the mechanic who helped take care of my plane when I was in hospital back in 2021 died of an unspecified type of cancer last month (he was a little younger than I am, still in his 50s).

"Survivor guilt" is a technical term. I wouldn't say that I feel guilty per se, but it seems strange and even unfair that I was the one everyone was worried about back in 2021, but I'm still here for some reason (and actually doing fine), and they're not.

I'm sure some of the rest of you have experienced this as well. I did everything I could to help myself, of course, but so did my friend with leukemia (probably even more so); in the end, it's just dumb luck.

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

Well, I have been in this brotherhood for five months already. And at times that I imagined I already know so much about our more frequent posters, there comes a post that makes me know more of a brother's journey. The process repeats. I keep learning more new things about PCa, and our support group members' individual experiences. You share bits and pieces of your experiences as & when needed -- when the information will be helpful -- strike the iron while it's hot. I like to do that too, and hope that I could be as helpful as our more frequent and more knowledgeable/more experienced members. Best,

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@northoftheborder

While screening can sometimes catch the very aggressive kind in time, I've read that it can often develop and metastasise in the year between annual screenings. It's almost a different disease: my oncologist told me it represents about 1 in 20 prostate cancer cases, and most typically appears in people of African or Caribbean ancestry (which I'm not).

In my case, there was was nothing visible in my prostate. They were trying to figure out where the metastasis on my spine had come from, and CT and MRI showed a perfectly-normal prostate with no signs of tumours and normal volume. After the tumour biopsy showed prostatic origin, they gave me a DRE, and the urologist thought -- just, maybe, not sure -- he *might* have felt a tiny nodule, but he didn't sound too confident.

In my case, that sucker just escaped the prostate almost as soon as it was born and made a beeline for my spine. That's what I mean by two different diseases ­— with the really aggressive kind, you might not have the luxury of years, or even months, to catch it early. And just coincidentally, for a week I was sharing a hospital room with an army vet (also not of African or Caribbean ancestry) who'd had the same experience: he was getting annual PSA screenings, and his prostate cancer just appeared out of nowhere and almost instantly metastasised.

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Yup…you had bad luck all right - and a type of cancer that moves so fast it’s practically impossible to catch early.
A friend had inherited a form of colon cancer genetic in origin. After her mother died in her 50’s from it, her GI doc performed colonoscopies every two years.
She was clean for 14 years until a stomach ache brought her to the ER - just months after her last negative c-scope.
Tests revealed metastatic colon cancer to the liver and biopsy confirmed the same type of cancer that killed her mother. Her GI doc reviewed her last colonoscopy, looking at internal photos of various areas he had covered; nothing showed.
She lasted about 2 yrs but succumbed to the disease anyway, regardless of her hyper vigilance, and athletic, organic lifestyle …dumb, rotten luck.

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@northoftheborder

True, although I would refuse to believe in a god who doles out special favours like surviving cancer only to those who beg and plead through prayer and denies those favours to others, or who has a cruel, complicated divine plan that involves killing millions of innocent people in wars, for example.

As pantheist, I prefer to believe in a caring deity who doesn't interfere in the physical world — it's up to humans to make the best of it or mess it up, as the case may be — but who is there to provide comfort and solace if we reach out and ask for it.

That, unfortunately, takes me back to "dumb luck" for my good response to cancer treatment so far. 🙂 YMMV

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I'm with you on that deity view. Sometimes I refer to myself as a Zen-Methodist. Mostly pantheist.
Thanks

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Thanks for initiating and adding too this string of posts. Yes, survivors' guilt comes in many forms. My dear wife of 53 years had multiple sclerosis (MS) for the last 20 years of it and I was caregiver. In Jan of 2022 we both contracted Covid. Mine was like a bad cold, her's started that way but the autoimmune disease modifying therapy (DMT's that suppress the immune system) sent her on a fast track to lung failure.
Could I have done more? Made her more comfortable over the years of quadriplegia? Challenged her more to retain function? And worst of all, could I have been somehow glad to be relieved the stress and strain of her cursed MS???
Don't know. And in spite of super support from our 2 grown and very wonderful sons - it still haunts me.
But life does go on. And I try, sometimes too hard, to make the most of every day. Fun and service to friends, family, and God (choose your concept) are great distractions.
(PC is now only an unwelcome distraction at this point of zero PSA's for the last 3+ years)
Blessing to all you guys and prayers you can enjoy some of all of your 'bonus years' after diagnosis.

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@grandpun

I'm with you on that deity view. Sometimes I refer to myself as a Zen-Methodist. Mostly pantheist.
Thanks

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We no longer have Methodists in Canada, because they were absorbed into the United Church of Canada in 1925 along with Congregationalists and some Presbyterian congregations. But the church I grew up in was very aware that it had started out as a Methodist church in the mid 1800s, and still did John Wesley's order of service, so you might say that I grew up as an honourary Methodist, and that we align almost perfect both on our religious backgrounds and current beliefs.

(There is still a splinter evangelical group called "Free Methodists" around the St. Lawrence River in Upstate NY and Eastern Ontario; I was told they got the name because they didn't charge pew rents in the 19th century, but that might be wrong).

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@grandpun

Thanks for initiating and adding too this string of posts. Yes, survivors' guilt comes in many forms. My dear wife of 53 years had multiple sclerosis (MS) for the last 20 years of it and I was caregiver. In Jan of 2022 we both contracted Covid. Mine was like a bad cold, her's started that way but the autoimmune disease modifying therapy (DMT's that suppress the immune system) sent her on a fast track to lung failure.
Could I have done more? Made her more comfortable over the years of quadriplegia? Challenged her more to retain function? And worst of all, could I have been somehow glad to be relieved the stress and strain of her cursed MS???
Don't know. And in spite of super support from our 2 grown and very wonderful sons - it still haunts me.
But life does go on. And I try, sometimes too hard, to make the most of every day. Fun and service to friends, family, and God (choose your concept) are great distractions.
(PC is now only an unwelcome distraction at this point of zero PSA's for the last 3+ years)
Blessing to all you guys and prayers you can enjoy some of all of your 'bonus years' after diagnosis.

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It sounds like you did everything you could to give her a warm, loving environment. I hope you feel comforted when you look back on that.

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@brianjarvis

Fortunately, the cases where “… it can often develop and metastasize in the year between annual screenings…” are so rare that it wouldn’t even make the evening news.

That’s also the reason why when PSA is being tested, both the % Free PSA and the PSA Doubling Time should also be tracked. Those additional datapoints may give an indication that something more serious might be lurking unseen that the PSA test might be missing. Also, these days there’s a PSE test that can be used that is more sensitive than the standard PSA test.

As for the DRE, these days many centers are moving away from that. The data show that if an irregular prostate is felt, that 50% of the time it’s benign; and of the 50% that were cancerous, 95% of the time an MRI would’ve picked that up anyway. (So, the value of DREs is being questioned these days, especially since many men are skipping PSA tests just to avoid getting a DRE.) If an elevated PSA is found, and other possibilities are ruled out, then go straight to the mpMRI,

How old were you when you were initially diagnosed with prostate cancer?

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Unfortunately, they're increasing and attracting some media notice: while they're drowned out by the majority of prostate cancer cases, PCa is so common that even 5% of them as the serious type accounts for what should be a huge health crisis. The recommendation in the U.S., Canada, and elsewhere to stop routine PSA screening has definitely exacerbated the problem, though as I mentioned, even with annual screening, this one can easily slip through.

The other consideration is that the serious type of prostate cancer disproportionately affects the Black community (of which I'm not a member), and we know from many medical studies that diseases in that category are often under-reported and under-treated. 🙁

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@brianjarvis

Fortunately, the cases where “… it can often develop and metastasize in the year between annual screenings…” are so rare that it wouldn’t even make the evening news.

That’s also the reason why when PSA is being tested, both the % Free PSA and the PSA Doubling Time should also be tracked. Those additional datapoints may give an indication that something more serious might be lurking unseen that the PSA test might be missing. Also, these days there’s a PSE test that can be used that is more sensitive than the standard PSA test.

As for the DRE, these days many centers are moving away from that. The data show that if an irregular prostate is felt, that 50% of the time it’s benign; and of the 50% that were cancerous, 95% of the time an MRI would’ve picked that up anyway. (So, the value of DREs is being questioned these days, especially since many men are skipping PSA tests just to avoid getting a DRE.) If an elevated PSA is found, and other possibilities are ruled out, then go straight to the mpMRI,

How old were you when you were initially diagnosed with prostate cancer?

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"How old were you when you were initially diagnosed with prostate cancer?"

I was 56 with a de-novo metastatic prostate cancer diagnosis, which is right in the middle of the typical age range for that type. The common, more-mild type typically manifests itself later in life. Some more-famous examples of the early-onset, aggressive type of prostate cancer:

- Musician Johnny Ramone (died age 55)
- Canadian politician Jack Layton (died age 61, just 2 years after initial diagnosis)
- Music and composer Frank Zappa (died age 52)
- Actor James Michael Tyler ("Gunther" on Friends, died age 59)
- Actor Gary Cooper (died age 60)
- Musician Dan Fogelberg (died age 56)
- Actor Bill Bixby (the Incredible Hulk, died age 59)
- Brazilian soccer star Marinho (died age 59)

Until very recently, this type of prostate cancer was considered unstoppable, and expected survival time was often short. It's just 5–10 years ago that that started to change, and now we suddenly have the hope of a longer life that was denied to those men (and the many thousands of non-famous ones in the same situation).

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I don't feel survivor's guilt per se but there are a few people I know that died unexpectedly and there are things I wish I had said to them. I really try hard now to let family and friends know I love and appreciate them.

My biggest guilt is probably that my mom had to die among strangers from COVID and we weren't allowed to see her and that I had to attend her funeral on Zoom which was awful--she deserved so much better. If I had to do it again, I would get some scrubs and sneak into the hospital to see her consequences be damned.

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@northoftheborder

"How old were you when you were initially diagnosed with prostate cancer?"

I was 56 with a de-novo metastatic prostate cancer diagnosis, which is right in the middle of the typical age range for that type. The common, more-mild type typically manifests itself later in life. Some more-famous examples of the early-onset, aggressive type of prostate cancer:

- Musician Johnny Ramone (died age 55)
- Canadian politician Jack Layton (died age 61, just 2 years after initial diagnosis)
- Music and composer Frank Zappa (died age 52)
- Actor James Michael Tyler ("Gunther" on Friends, died age 59)
- Actor Gary Cooper (died age 60)
- Musician Dan Fogelberg (died age 56)
- Actor Bill Bixby (the Incredible Hulk, died age 59)
- Brazilian soccer star Marinho (died age 59)

Until very recently, this type of prostate cancer was considered unstoppable, and expected survival time was often short. It's just 5–10 years ago that that started to change, and now we suddenly have the hope of a longer life that was denied to those men (and the many thousands of non-famous ones in the same situation).

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I was fortunate that I first heard about prostate cancer and PSA testing in the mid-90s when I came across articles similar to these (see attached).

It was then that I committed to getting annual PSA tests when I turned 45y (in 2000). So, exactly 1 week after my 45th birthday, I had my first PSA test (it was 1.3 ng/mL).

If it was going to happen, my goal was to catch prostate cancer early. About 12 years later (at 56y), I was diagnosed with low-grade, localized prostate cancer.

If I hadn’t seen those articles in the mid-1990s, not sure how I’d be doing today.

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