Confusing Messaging about Prostate Cancer

Well, there's the clinical data...

What you provided indicates higher risk and your medical team may not be wrong about recurrence.

The questions:

Will it return?
When?
Where?

Those are unknown other than "likely."

Other questions, age, co-morbidities, your individual preferences when balancing quality versus quantity of life.

You could be proactive and treat now based on the clinical data you have. You would need to decide in conjunction with your medical team, ADT, ARI, Radiation...if so, how long, which ADT, which ARI, what type of radiation,, do you extend the treatment to the pelvic lymph nodes, how long would you be on the ADT...would you combine two, all three, just do the ARI...?

Radiation by itself to the prostate bed with your clinical data may be "useless" given the likelihood of systemic disease outside the prostate bed.

As to the side effects, yes, this forum has the entire gauntlet and the varying degrees men have endured. Think statistics and Bell Curve, standard deviations, mean, mode, median, average.

Throughout my time on treatment over the last 10+ years I have not had the side effects interfere with living with the exception radiation places on traveling.

Mitigating the side effects can in part be a function of:
Diet
Exercise
Managing stress.

I've peaked behind the door of death by, not with prostate cancer. It's a hard no for me and my medical team knows that and in part, it is a factor in our decisions.

So, talk with your medical team, discuss what criteria they and you think would necessitate a decision to treat, then, through labs, imaging and consults, actively monitor your PCa, treat when those criteria are met and inform the treatment decision.

Another thing to think about and discuss with your medical team is what is the risk of actively monitoring and not treating until that decision criteria is met?

You have choices, that's the good news. It's also the uncertainty since there is no definitive answer, it depends. Guidelines such as the NCCN and AUA are based on science but are population based and lag behind ongoing medical research.

Kevin

Kevin,

What do you mean by a “hard no”?

I like the gallows humor of your doctor! Still, the final outcome is the same, isn’t it? What makes dying of PC more frightening than dying of a heart attack? For me, it is holding onto the perception of control until I realize I really don’t have any. Perhaps that is the real lesson here. Still, everyone is in a different space/time and I respect that.

I like the gallows humor of your doctor! Still, the final outcome is the same, isn’t it? What makes dying of PC more frightening than dying of a heart attack? For me, it is holding onto the perception of control until I realize I really don’t have any. Perhaps that is the real lesson here. Still, everyone is in a different space/time and I respect that.

Maybe this works, but, I’ve been told to take vitamin D, which is D3, since I started on ADT. I know that everybody else that I’ve heard from with prostate cancer has done the same thing.

Checking bottles of vitamin D two different brands just D3 in them.

I’ve been taking at least 2000mg every day, are they recommending a lot more?

The difference is dying probably quickly and painlessly as opposed to a very slow agonizing death.
Not only do I personally know men who’ve died of this disease but two of my Drs have said to me “…you DON’T want to die from prostate cancer…”
I don’t think it was a scare tactic; we’ve all experienced side effects from treatment and some of them are not pleasant. I never want to experience the side effects of the disease itself - terrible bone pain, spinal deterioration from metastasis, liver impairment causing just about every metabolic problem you can imagine.
I know we always talk about quality of life as it pertains to ending treatment for a more comfortable passage to the inevitable. But I’m not so sure with this one. JMHO

Climber - you hit the nail on the head !!! Prostate cancer kills MUCH more men than people with breast cancer in North America ( NA ) each year ....BUT GETS ONLY 2-5% OF THE FUNDING BREAST CANCER GETS ! PC is very serious , as more people die from it than breast cancer . There is a HUGE GENDER BIAS for funding and social networks . It goes like this ..."men can deal with it , but breast cancer patients need research and care " . It is so unfair how little money PC gets in comparison to Breast Cancer ! YET , more men die of PC . We have to turn this around . I have started talks with my MLA and MP in Canada . They are even shocked at the low funding !

My father died of prostate cancer. His last few days he was on an extreme amount of narcotics to help with the pain, but they also resulted in him being out of it, barely able to even able to talk to anyone.

He had an incredible pain tolerance. He had all of his back teeth, ground down and crowned without novocaine. Would come home and eat dinner with us every night after having that done. Prostate cancer pain is intolerable near the end. You don’t want to go there.