Newly diagnosed with prostate cancer and still gathering information

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

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

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

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?

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.

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

Lou

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

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.

At this time, my Urologist is in the process of getting a Petscan to determine if the cancer is still only involving the prostate. Of course with insurance involved it doesn’t happen quickly. The Urologist told me that I will have the opportunity to meet with an onocologist to discuss other possibilities for treatment. I took into consideration that both of the doctors I have seen are surgeons so I feel that surgery would be their first choice which has been the case. My preference is for the least invasive procedure. I have been reading about HIFU as an option if I am a candidate for this treatment. The first doctor I saw painted a very bleak picture for any type of radiation, and this was without a Petscan. An hour after receiving my diagnosis his office was calling me to schedule the surgery.