Confusing Messaging about Prostate Cancer

Welcome to the club no one wants to join.

You’re right that the song “Yesterday” is indeed fitting and you’re not being melodramatic. No one but us knows what we’re going through. I’ve often thought that just for a day I wish my friends and family members could experience what I’ve had to experience and continue to experience each day.

Each of us that faces prostate cancer is on a similar journey and the reality is that life after getting PCa is different than before. We may have to seek joy differently but life is still worth living.

How about the song by Carole King- 1971- ITS TO LATE BABY.

What a great post. My situation is similar to yours. I have a mutation where P53 function is lost. I met with my surgeon recently to discuss the “elephant in the room”. I asked his opinion on odds of being cured, overall survival, and likelihood of PCa returning after I stop Orgovyx and Zytiga in 19 months.

He was pleased as to my current condition after salvage RALP and IMRT. Forstbthe hood news: No co-morbidities, undetectable PSA, little weight gain, little loss of muscle mass and a positive attitude which he said might be the best thing I’ve got going. Then came the news I expected but didn’t want to hear. Cure is unlikely. He expects the PCa to return within 5 years. (My medical oncologist thinks I’ll go 7 to 9 years). If I’m lucky I’ll just die with the disease and not from it.

No one except fellow stage 4 cancer patients can grasp the seriousness of the situation. All others just believe that if you get PCa you get surgery and/or radiation and life continues as before and you’ll never have to think about it again.

If only life was that simple.

My personal opinion as a 75 year old with Gleason 9 PC is that I will probably die of some other age related disease like a stroke or heart attack before I die of PC. Of course I use the word “probably” because we simply don’t know. My approach is to live in gratitude for each day and the people and things in your life, which may include doctors who treat your PC aggressively. Perhaps the issue is not so much the Cancer, as it is fear of the unknown future. So as they work on the PC, perhaps you might focus on what is true for you right NOW.

I agree that there is no "back to normal" with stage 4 — but also, the goalposts keep moving out. As I've mentioned in previous posts, I was told initially in 2021 to expect progression in 2-ish years (castrate resistance, etc) and maybe 5 years' survival (7 at the outside). Those numbers kept increasing, and now they don't give me a number any more, just "lots of years".

If your or my PCa becomes active again in 5 years, that's just the start of a new process, not the end, and by then, there will likely be even more and more-effective treatments. In the meantime, the longer our cancer stays dormant, the better, in every sense.

Note also that the "15+ years" for advanced prostate cancer, when people make it there, is the result of taking some pretty-challenging treatments, including surgery or radiation, years of ADT and ARSI, and maybe some rounds of chemo (among other treatments), all the while figuring out how to overcome the fatigue and somehow lead a healthy, active lifestyle

Long-term survival with stage 3 or 4 prostate cancer is not something that just happens even if you ignore it. Advanced PCa *is* serious, but it's no longer hopeless for us to fight back. We're getting new and better weapons every year.

I have been diagnosed with PC. Intermediate with a PSA of 7.4 and 3 cores. I have almost no symptoms and am happy with the way things are. I am 78 and considering either TULSA PRO treatment or do nothing. Doing nothing is a worry because I don't know what the cancer will do as it progresses and the suffering I will encounter. The side effects of fighting the cancer is a real concern. I don't want to live with incontinence or other bad effects of treatment. The dr. told me I have a 100percent chance of living another 5 yrs. if I do nothing. I'd like to live longer because I'm active and healthy. If I was unhealthy, in pain or unable to be mobile or to do the things I like doing, I wouldn't do anything. I want to live long enough that my 4 yr. old grandson will have good memories of me.

Do you know what your Gleason score is? That tells you how aggressive your cancer is and is a very important number.

Dying from prostate cancer is extremely painful, you don’t want to go there. My father died from it. He had his teeth ground down and crowned without Novocaine, came home for dinner every night had no problem eating. The pain from prostate cancer was unbearable for him.

I am 76 and have had surgery and years later radiation followed by seven years of ADT. I had no cancer symptoms at all for the 14 years I’ve been on treatment. ADT did give me hot flashes and some brain fog, but has allowed me to live for all this time.

For the least amount of disturbance in your life, radiation really works well and seldom causes urinary problems, at least for a few years. See a radiation oncologist to see if you are a good prospect. My brother is your age and had that done last year, and has no problems from it.

Tulsa pro may work for you. There are requirements. It is not covered by insurance and cost about $30,000. SBRT radiation is used commonly it works quite well for people with as few cores as you have cancer in. Cyberknife and Meridian Technology SBRT gives you the lowest chance of having nearby tissue affected. Look into it. They are covered by insurance.

Don’t just let it go you will regret it, you could live well into your 80s if treated.

Hi bobbygene,
I am also 78 and had the robotic, nerve sparing surgery 4 months ago. I wrote a rather lengthy posting several weeks after my surgery in a thread entitled "Is 76 too old for prostate surgery".
Here is the link to my posting. Since then my feelings about my decision haven't changed, my PSA came back nearly undetectable and I have a followup in 2 weeks.
Don't hesitate to ask if there is anything more you want to know. I realize how hard it is to deal with our fears as we wade through the myriad information. Sometimes I felt what I called "analysis paralysis"! Best wishes in whatever you decide, you've come to the right place for good advice!
https://connect.mayoclinic.org/comment/1075893/

I will second what @jeffmarc wrote. I watched three grandparents, my father, and my childhood friend die from different cancers. Even with modern palliative care, it is a brutal, drawn-out way to leave this earth, and I wouldn't recommend that anyone choose it lightly if there's another alternative (though I respect that each person has to decide for themself).