Newly diagnosed with prostate cancer and still gathering information

Posted by brucemobile @brucemobile, Apr 3 9:59am

I was just diagnosed within the last two weeks. My PSA is 4.1 which I’m thinking isn’t that bad. I was not prepared for the results of the biopsy. Gleason 4+3 intermediate unfavorable. 13 of 15 cores positive. The urologist is favoring surgery. Second opinion also surgery but wants a Pet scan which is in the process of being scheduled. I am in Alabama and expect to be treated here. I am still in the asking questions and doing research stage, at this point I don’t know until after the pet scan if I have any options. The information on the post operative effects ofsurgery goes from mild to wild, I’m concerned. Anyone who can share their experiences would be appreciated.

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neronel | @neronel | Apr 12 8:52am

In reply to @heavyphil "Hey Lou, I had 25 treatments instead of the older 35-39 protocol. Same amount of radiation,..." + (show)

Hi Phil,

Just curious about your decision to go forward with salvage radiation. Did you consider your age and doubling time?
I’m thinking that at my age of 75 (today is my birthday) and my doubling time of about 16 months, I’m wondering if it’s worthwhile going forward with the salvage therapy, especially with the possible long-lasting side effects.
So, is it better to live another 5-7 years before things become a problem or to live a little longer with the unpleasant side effects? This is my dilemma. It seems like I’m between a rock and a hard place. I could have regrets no matter which direction I go, treatment or no treatment. And I could have side effects from a treatment that did not help.
So, here are my possible outcomes.
1. PSA becomes undetectable again, no or minimal side effects.
2. PSA becomes undetectable and unpleasant side effects.
3. PSA does not change or increases with no or minimal side effects.
4. PSA does not change or increases with unpleasant side effects.
Each one of these outcomes is possible. 1 and 2 I could tolerate without regrets.. Not 3 and 4.
I guess, I’m wondering, how did you decide?
Any comments?
Lou

heavyphil | @heavyphil | Apr 12 9:49am

In reply to @neronel "Hi Phil, Just curious about your decision to go forward with salvage radiation. Did you consider..." + (show)

Lou, you’ve gamed it out pretty well as far as I can see. I never really relied on doubling time because I felt that it could always change and possibly accelerate - yes, I am a pessimist.
There was one interval in which it almost doubled in 3 months and that bothered me, but then it held fairly steady for about a year before going up steadily in the last year.
I am 70 and fairly active and healthy so I could see myself living long enough to get metastasis; that was the basis for my decision.
Maybe at 75 my decision would be different but I cannot say. You are certainly being realistic with your 5-7 yr life expectancy but there are so many unknowns in the equation it could be much longer…or not.
Another way to look at it is this: most recent studies show that post surgical PSA’s up to .7 may not even need ADT, so in your case you have over a year to reach that number, IF your doubling time remains the same.
Also, your outcomes from either treatment at PSA’s of . 25 or .7 are the same, so why not wait? Not medical advice, just another perspective. Best,
Phil

jeffMar | @jeffmarc | Apr 12 10:42am

In reply to @neronel "Hi Phil, Just curious about your decision to go forward with salvage radiation. Did you consider..." + (show)

When you look at your four options, they’re missing a lot of choices. In most cases, recurrence does not result in any side effects from The cancer. It can take years before damage is done to organs that causes side effects.

It is more likely that your PSA will go up and you won’t notice any side effects. What you want to do is keep monitoring your PSA, And base your future treatments on what your PSA does and what a PSMA Pet scan shows.

At the PCRI conference a couple of weeks ago they discussed the fact that salvage radiation only works with 1/3 of people the other 2/3 have cancer somewhere else. A couple of the doctors recommended waiting until the PSMA PET test actually showed metastasis and then use SBRT to zap it. Dr. Scholz Said that this has resulted in remission in a very high number of cases. The PCRI conference is available on YouTube, If you want to look at some of the latest information on what’s going on with prostate cancer.

I had Salvage radiation 12 years ago 3.5 years after my cancer came back following surgery. At that time, there really was no other option, Besides waiting. The salvage radiation did give me 2 1/2 more years with undetectable PSA, but it’s come back three times since then.

Did you get genetic testing to find out if genetics could be a factor. Does anybody else in your family have cancer? You can get it here for free, takes 2 to 3 weeks to get the results and a genetic counselor will call you.

Prostatecancerpromise.org

Don’t check the box that you want to have your doctor involved or it will greatly delay the test.
The reason you want to get genetic testing is that getting prostate cancer could be due to genetics. If you have BRCA2 for example then surgery may be the best place to start.
With a Gleason seven you have a good chance of getting treated and being cured.

neronel | @neronel | Apr 12 11:40am

In reply to @heavyphil "Lou, you’ve gamed it out pretty well as far as I can see. I never really..." + (show)

Thanks Phil. What was your PSA when you decided to get the salvage therapy?

Lou

chippydoo | @chippydoo | Apr 12 12:01pm

In reply to @brucemobile "At this time, my Urologist is in the process of getting a Petscan to determine if..." + (show)

I had an orthopedic surgeon once tell me if you keep coming back you will end up with surgery as I am a surgeon. RO will want to do radiation and an SO surgery. I chose surgery and ended up with 25 sessions of salvage surgery 2 years later. Have a recently diagnosed friend that chose radiation for Gleason 9 because he knows to many that had removal to only have salvage radiation later. The fact is, you won't get out of this unscathed by one or the other. Best wishes on your journey.

neronel | @neronel | Apr 12 12:21pm

In reply to @jeffmarc "When you look at your four options, they’re missing a lot of choices. In most cases,..." + (show)

Hi Jeff,

I started to do the stereotactic therapy. From the PSMA-PET imaging, Ga68, there was a slight uptake in the obturator lymph node. 2.9, just above the 2.5 ambient. The pathologist wasn’t even sure it was cancer. The surgeon didn’t think it was but they treated it anyway. Three sessions of radiation therapy. 6 months later, my PSA went from 0.17 to 0.23. So, it still went up. Next PSMA-PET was negative. MRI negative. So, the radiation took something out. Not sure what it was. Surgeon thought it was benign.

So, now they are looking at treating the entire prostate area. Current PSA is 0.25. The side effects I was referring to were from the treatment. That’s my focus right now. Is it worth taking the chance that the treatment will cause unpleasant side effects, without success, or going untreated for the next 5-7 years without symptoms. Don’t know.

Most papers I’ve read say there is a 75% chance that the doubling time will increase. My doubling time is 15.8, based on the best fit curve for the PSA starting from 0.12. DT=ln(2)/m, where m is the slope. If that is the case then, I’m not sure I want to undertake the treatment.

Dr. Pat Walsh had some good comments about this. He said, if your GS < 0.8, your DT>15, and your time to recurrence is > 3 years, anything we do will not improve on that and will most likely affect your quality of life.

If I have the treatment and it’s unsuccessful with side effects or I don’t have the treatment and suffer the consequences, but later on.

By the way, how high does the PSA have to get post prostatectomy before you have symptoms, like bone pain?

I’m thinking that I’m already metastatic but probably still microscopic because the imaging is negative. So, maybe just wait until things go bad and treat it then?

I would really like to just forget about this stuff and get on with my life. If I don’t die from prostate cancer, I’only have about 11 years left anyway.

Thanks for your comments,

Lou

jeffMar | @jeffmarc | Apr 12 12:59pm

In reply to @neronel "Hi Jeff, I started to do the stereotactic therapy. From the PSMA-PET imaging, Ga68, there was..." + (show)

@neronel

Hi Jeff,

If I have the treatment and it’s unsuccessful with side effects or I don’t have the treatment and suffer the consequences, but later on.

By the way, how high does the PSA have to get post prostatectomy before you have symptoms, like bone pain?

I’m thinking that I’m already metastatic but probably still microscopic because the imaging is negative. So, maybe just wait until things go bad and treat it then?

I would really like to just forget about this stuff and get on with my life. If I don’t die from prostate cancer, I’only have about 11 years left anyway.

Thanks for your comments,

Lou

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One thing to consider was discussed at the PCRI conference. When PSA rises but can’t be found in the PSMA Pet scan, do an MRI, it will be found in Retroperitoneum or lung with high frequency.

The PSA can go into the hundreds before people feel anything from it. I would suspect that bone pain would be a common symptom since I’ve seen it frequently.

I had a metastasis on L4 in my spine for a couple of years years.. Its growth was completely inhibited by Zytiga and ADT. I did finally have it zapped Never felt anything from it, but my PSA never exceeded 1.

robertov | @robertov | Apr 12 2:41pm

You always have options. I’m a Gleason 8; diagnosed in November. Have been researching and I’m down to 2 options. I’m wondering why you are considering RP so strongly? Everything I’ve heard suggests that recurrence is high and therefore you will still need radiation. OR they will say they want to radiate as well. So why Prostatectomy?

heavyphil | @heavyphil | Apr 12 2:54pm

In reply to @neronel "Thanks Phil. What was your PSA when you decided to get the salvage therapy? Lou" + (show)

0.18….but the routinely scheduled PSA, which occurred during the time for MRI and PET and other appts. Came back 0.15, a couple days before starting Orgovyx.
So all this yo-yo game of up and down PSA’s could go on for quite some time….or put you in a mental hospital suffering from chronic anxiety. Another choice you’ll have to make.
Phil