PCA Prognosis?

[Sagewiz]

Hi All!

I am due for my 4rd Lupron treatment and follow-up next week.

My bloodwork is done and my PSA is still <.01 for 9 months now.

I have BRCA 1 and 2.

When my Urologist gave me my initial diagnosis after my biopsies (Gleason 4+3=7 and 11 of 12 biopsies positive). nHe gave me a full report and said I was not a candidate for prostate removal as the tumor was covering the entire organ and likely metastasized to the adjacent tissue (both PET and bone scan showed no metastasis to bones, nodes, seminal vesicles or any other detectable area.

He gave me a report showing that I had about 2 years if I pursued no treatment and a 52% chance of making it to 5 years if I did all possible treatments. My RO then updated that and said that after HDR surgery and EBRT for 6 weeks he could "get me to 10 years".

I am on ADT and finished both radiation treatments, but there has been no PSMA PET and no analysis to show how effective the treatments were other than PSA numbers. I asked my MO about a PSMA and they said that they will only do one if my PSA starts to rise. (I find this odd).

However, there has been no update in my prognosis after all of this.

After reading many of these posts, I a see that results run the full gamut of decades of survival to months for those with the same treatment I am having, but more widespread metastasis.

I will press my MO about an update. As someone recently posted: "PSA stand for Permanent State of Anxiety".

i am on heavy supplements, and aching to start an exercise program but the fatigue has been overwhelming prior to the diagnosis and still is my main issue. I try to push through, but my gains are erratic and not cumulative, it seems.

Any insights, suggestions or recommendations?

Thanks!

[Tall_Allen]

Your RO is correct. Radiation can take years to completely destroy all prostate cancer cells (the DNA-damaged cells hang around like zombies). Meanwhile, PSA is your only indicator that radiation worked. PSA may bounce around for years and never gets to undetectable.

[MarkS]

I think you had a narrow squeak! I have some similarities to your case. I'm G9 and was diagnosed by a urologist as having localised advanced prostate cancer. Then nothing showed up on the PSMA PET and bone scans. I was down for a prostatectomy in December. In the meantime I saw an oncologist who was like a breath of fresh air. I went the radiotherapy route instead (37 days of VMAT to prostate, prostate bed and lymph nodes). Also on ADT. Now an 80% chance of a cure(?) which I'm trying to make the most of with a heavy exercise programme.

I know too many people who have had recurrence after a prostatectomy. The Da Vinci robotic op I would have had is notorious for spreading cancer cells through the body as the prostate has to be cut into small pieces in situ to extract.

So I think you're much better off on the treatment you've had and may be cured? Even if you do develop mets, survival seems to be close to 10 years or so as any mets can be treated promptly, and who knows what advances will happen over the next 10 years?

I would suggest you try your hardest to get exercise though. I think it makes a huge difference. I'm getting my 3rd Lupron injection shortly and feel pretty normal except for zero interest in tits & bums!

Cheers, Mark

[vintage42]

So I think your HDR and EBRT (probably IMRT or SBRT) were the best treatment, as is the follow up with ADT (Lupron). You might consider switching to the more tolerable Orgovyx, and adding an inhibitor like Xtandi, Erleada or Abiraterone for "doublet therapy". I am very pleased with my combination of Orgovyx and Abiraterone because of their low side effects.

[MoonRocket]

I recommend nixing the heavy supplements. Just eat a good plant based diet. That is all you need. Plenty of exercise, both cardio and resistance training and you'll be fine for many many years.

My life is now measured in 3 month increments.

In between MO visits I don't dwell on my condition except for this website and that's mostly to offer support to others PCA and to learn about new treatment offerings.

I had a similar diagnosis and I'm just completing 5 years. I'm back on hormone treatment after my initial curative treatment (RP + WPRT + 27 months of ADT + zytiga). Thanks to the EMBARK trial, I'm on mono enzalutimide and doing fantastic.

[London441]

I would get rid of any doctor that tells me how much time I have, especially how many years ‘he can get me’. He’s pretending to be in control of that. It’s unhelpful, arrogant and irresponsible. We are all different, and beyond that, how we live is a major factor. This is usually given little or no attention by doctors. Patients outlive doctor’s ‘time to live’ predictions by years routinely.

Instead I would trade in the ‘heavy supplements’ for the exercise you say you’re ’aching to start’ but are too tired to do. Nothing but the exercise will improve the fatigue, especially not the supplements. It’s a far greater metric of the longevity you seek than anything else, but more importantly the quality of it.

A reasonably healthy choice of foods that you can maintain is better than any diet. Diets mostly fail. Some supplements indeed help, but some cause harm, especially in high doses. Many won’t do much of anything.

To reiterate : The exercise is orders of magnitude more essential than anything else in your control-in every way. Waiting to start will only make you more tired. Forget about ‘cumulative’ and ‘erratic’ gains, that’s living in the past. We swim upstream at all times now, but it’s more than worth it. You do not want the alternative. Great luck to you!

[Mgtd]

I will echo London441. Do not expect your results to be “like in the old days.” Just start light and slowly make changes.

One thing may help. Go to the gym at about the same time. In doing this I made some “gym friends”. I have learned to not talk to guys on exercise bikes. They get their exercise in and you waste time unless you are also on the equipment.

Best of luck.

[Hawk56]

What London441 says is perhaps the best advice. I would tell your medical team you are not interested in any conjectures on their part about your longevity, they don't know, neither do you.

I've said this before, three things one's medical team cannot due for you:

Exercise

Diet

Managing stress.

All three play a role in your ability to go through treatment, manage or mitigate the side effects and contribute to your longevity through cardiovascular, an active lifestyle, reducing risk or things like diabetes, osteoporosis...

If you've had any statistics on college, your understand terms like mean, mode, median, Bell Curve, standard deviations, sampling size, confidence intervals...if you do, you'll appreciate why your medical team should not be saying how long you have...

If you remember your high school or college science courses, the scientific method, levels of evidence...again, you'll see things through a different lenses.

As to your comments -"I asked my MO about a PSMA and they said that they will only do one if my PSA starts to rise. (I find this odd). Unless he's paying for it, what right does he have to deny ordering the scan? There may be reasons such as insurance coverage and as a general rule, image if it may change a treatment decision. Still, who is he to say no!?

Attached is my clinical history, I have written about my journey, the mistakes made early on with SRT and how that framed the way ahead with rules for myself and my medical team so as not to repeat that mistake. Her are a few pertinent ones:

Don’t Walk In Cold to an Appointment. To make sure I do the best thing for my individual prostate cancer, I need to educate myself.

Walk in the door ready to start the conversation at a different level.  I don’t have to spend time talking about the basics, things like Gleason grade and clinical stage and what they mean.  I already know.  I can have an intelligent discussion about the merits of a particularly treatment for my cancer, my likelihood of being cured, and risk of side effects.

Please do your homework. I expect you to have reviewed my medical records prior to my appointment. You have looked at my x-rays; you have my pathology report; you know how many children I have. In the world of cancer care, every scrap of data must be scrutinized for its significance.

Respect my point. of view., listen to all sides thoughtfully before reaching a conclusion. With patience and finesse, I am sure you can help me to feel confident about the plan you have shaped for me.

Be curious. Do not close your mind to new hypotheses and don’t ignore clues that might lead you toward the best results. Please rid yourself of the temptation to make your day easier by delivering perfunctory care.

Kevin

[Lost_Sheep]

MarkS is right about exercise. The better your condition (especially cardio-vascular) the better able you are to resist and recover from the side efects of ANY treatment you have.

Add to MarkS, London441's advice about exercise. And add my dictum, "Exercise begets energy." Put it this way: 45 minutes of light 5 days a week (mixed cardio and weights) exercise will make you tired for a week. 4 weeks of such exercise will energize you for a month. Not to mention the benefits of the endorphins released during the "runner's high". Push yourself. Exercise with a friend. You will gain by the companionship and mutual encouragement as well as the straight-up health benefits.

A robust constitution is also good for supporting your immune system, which DOES have a viable role in hunting down and killing off cancer cells. Look up "immunotherapy for cancers".

TallAllen is also right. Here is my description of why PSMA-PET scan is unlikely to be valuable. With a PSA so low, any metastasis is likely too small to be detectable with any scan technology available today. And PSA is currently the best proxy measure for cancer activity we have.

[Sagewiz]

thanks for the input all! Very reassuring.

[j-o-h-n]

Since you're the sage, you should be wise enough to realize that your doctor's crystal balls (not the ones between their legs) need a thorough cleaning. Predict years, bullshit.... they can't even predict tomorrow's weather. Just tell them that I said they should stick it in their ear. Remember, you can tell them off because where there's a wiz there's a way.

Good Luck, Good Health and Good Humor.

j-o-h-n

[Brendan1904]

Just keep battling and don't give up.