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How to discuss post treatment status with Friends and Family

Posted by mn281 @mn281, Jan 17 8:25am

I'm just curious how those of you that have been treated for Prostate Cancer (RP, Radiation, etc.) talk about your cancer status assuming the treatment was successful with success being pathology suggesting cancer contained to prostate immediately after RP and/or PSA levels non-detectable for RP or below level of concern for RT at your regular check intervals?

Do you consider yourself cured, in remission, a cancer survivor, cancer free? I'm just wondering how you talk about it post successful treatment.

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

trusam1 | @trusam1 | Jan 21 8:53am
In reply to @edmond1971 "Very good points by 'weakbutstrong' Within the small circle of people that want to know, or..." + (show)
@edmond1971

Very good points by 'weakbutstrong'

Within the small circle of people that want to know, or need to know, what I do is write things down, and that begins with my questions going into my every 3-month visit with my health team, and also the results of it. I make sure my write up is clear, complete and positive. I go into the details of the treatment as this is my journal, and I also spell out my position on my own mental health. This isn't to say this is the approach that everyone should take, but this works for me to have as a chronicle of the experience.

keep the faith and tell the story that counts

Jump to this post

I took the journal approach with initial diagnosis, treatment, recovery and side effects. I have a personal online blog and post there. I could then easily point folks to that for updates. I included trigger warnings so people were aware I was going to talk about ED. I discovered with my peers (older men), that was the most helpful topic for them to learn about, and got thanks for that.

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bens1 | @bens1 | Jan 22 6:47am

mn281: I try to keep reports post narrow margin radiation, straightforward with my wife and children, if my PSA goes up by more than 2 points that's a potential problem, according to my RO and until that time, "I am good" works for me. I have a normal blood test every quarter that includes my PSA and convey that if I am asked. I find that it seems to minimize their worry and those that want more information from the blood test, like my wife, gets her own copy. I provide a quick comment about the PSA and any new image or treatment technology I might have read about to always try and give hope for the "what if it comes back" concept. I think that helps my family, friends and me. If something happens related to reoccurrence, I will explain what I know at that time.

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jimcinak | @jimcinak | Jan 23 10:24am

In general, I say that my cancer is in remission and that I hope it stays that way for the remainder of my life. (diagnosis and proton beam treatment at age 70, now age 73). A bit more detail would be that my PSA’s are staying constant and low.
I am fairly open with ‘strangers’ about having had prostate cancer - saying “I had prostate cancer and I benefitted greatly from the experience of other men, so I am quite willing to share my ‘story’. There was a lot of serendipity in my diagnosis and in my treatment choice, so I am open to other men(and women) in talking about my experience.
I do talk about the side effects of my limited term treatment with ADT. I think I was under equipped with knowledge about working against those side effects. (FWIW: It was also the middle of the pandemic; so some things are hard to solely assign to ADT).
Hope this helps

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