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.

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

topf | @topf | Apr 13 12:39am

In reply to @robertov "You always have options. I’m a Gleason 8; diagnosed in November. Have been researching and I’m..." + (show)

How old are you. I was diagnosed with Gleason 8 in late December and just turned 52. The question when it comes to long-term survival is whether RP with possible salvage RT ( plus ADT) has lower up-front risk of a second recurrence compared to that of a first recurrence with primary RT.

heavyphil | @heavyphil | Apr 13 6:58am

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,

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

Jump to this post

ONLY eleven years left??!! Geez, that’s a pretty long time…

neronel | @neronel | Apr 13 9:01am

In reply to @heavyphil "ONLY eleven years left??!! Geez, that’s a pretty long time…" + (show)

Hi Jeff,

The 11 years is as if there was nothing wrong with me. That’s a 50% mortality. I don’t expect that.
The question remains without an answer. Do I want to spend the rest of my life with unpleasant side effects from a treatment that may or may not work or forgo the impeding consequences later. What is the ultimate answer to the ultimate question?
Lou

brucemobile | @brucemobile | Apr 13 10:01am

In reply to @neronel "Hi Jeff, The 11 years is as if there was nothing wrong with me. That’s a..." + (show)

That is exactly where I am. I have come to realize that everyone can potentially have success or failure either way thy choose to go. Making the best decision for you with the information you have

jeffMar | @jeffmarc | Apr 13 10:29am

In reply to @topf "Where did they say 1/3 in the video? I watched almost all of it and don’t..." + (show)

This has been talked about many times. I’ve seen people that are doing online. Webinar is about Pluvicto discuss the fact that it only works real well in 1/3, OK and 1/3 and not at all in 1/3.

That wasn’t brought up in this specific meeting, but I think if you search around, you will find other articles that discuss that as a limitation of Pluvicto.

jeffMar | @jeffmarc | Apr 13 10:52am

In reply to @neronel "Hi Jeff, The 11 years is as if there was nothing wrong with me. That’s a..." + (show)

The problem is whatever treatment you select they’re going to be a side effects for the rest of your life. Radiation has the least side effects after the fact (vs surgery) but at some future date it may cause problems. That’s why using Spacing Technology, as well as SBRT via a MERidian type system can reduce the chance of a future problem.

Unfortunately, there is no easy answer. You may live longer with surgery, Because it allows you to use radiation if it comes back. I wouldn’t base my decision on the mortality tables, better to consider family longevity. My father died at 88 of prostate cancer, The mortality tables would have probably had him dying 10 years earlier.

lag | @lag | Apr 13 10:54am

In reply to @topf "Where did they say 1/3 in the video? I watched almost all of it and don’t..." + (show)

I haven't seen the video, but my husband's Mayo urologist, Dr. Kwon, has told us the same 30/30/30 odds, as has our local oncologist at the Simon Cancer Center in Indianapolis. Unfortunately, those odds are what the data shows to date.

neronel | @neronel | Apr 13 12:57pm

In reply to @jeffmarc "The problem is whatever treatment you select they’re going to be a side effects for the..." + (show)

Jeff,
Yeah, my father lived to 93, almost 94. As far as I know, I’m the only one stuck with PC. I’m not going to make it that far. That I can tell you.
My brother is 76. His PSA is 0.6. Never goes up. So, there’s that.
I did the surgery. Initially there are some side effects but they go away after a few months. Radiation gets worse.
My friend had surgery, external beam, then adjuvant brachytherapy a few months later. I asked him how things are going. He said my stuff doesn’t work. Then I asked him how is girlfriend felt about that. He said, she sticks around as long as I pay the bills.
This is why I chose surgery. If it comes back, there’s plan B, radiation. I guess you could call it Plan R (Dr. Strange love.)
Lou

robertov | @robertov | Apr 13 1:32pm

In reply to @topf "How old are you. I was diagnosed with Gleason 8 in late December and just turned..." + (show)

I don’t think so. I can’t recall all the studies but RP seems to have uncomfortably short times before recurrence. Because of the risk of undetected cancer, they tend to radiate around the lymph and pelvic areas. But, if you are going to do that, why not just do radiation. That way you don’t have the prostate removal to deal with. With what I have been researching, all the indications seem to be, we have been over-treating. My current guy has the same philosophy as I do…don’t treat if you can’t see.
I’m 73 btw. As a further thought, less applicable to me, but more for you is: the technology and mindset is changing quickly. There will be better technology latter on if you need it. But some of the RT I’ve seen have incredibly long cancer-free results.

robertov | @robertov | Apr 13 1:43pm

In reply to @heavyphil "0.18….but the routinely scheduled PSA, which occurred during the time for MRI and PET and other..." + (show)

I thought that 0.2 PSA is when they start to get a bit concerned. But then they monitor it to see what direction and the doubling time. Once on Orgovyx, keep researching. You’ll be surprised at the options you have. It is worth it to put in the time. Forget the PSA, look for a treatment that you are satisfied with. For me, surgery could never be that.