Advise on next treatment and side affects

I can't give any suggestions because I haven't been there or done that. I'll leave that to the ones who already crossed that bridge.

I'm just astonished that the beast can lay dormant and in hiding for 9 long years, then come out for another round of attack. I wish they would do some sort of study in attempt to discover why he raises his ugly head after so many absent years - and give those who are in "remission" some suggestions, based on proven science, what we can do to stay in "remission".

Good luck to you, guyster.

First, 10 years is a pretty good run for only primary treatment with a high risk situation. You are effectively starting over now with the only limitation being that surgery is off the table.

FYI - my Dad had PCa recurrence at 13 years after brachytherapy and my wife at 17 years after BCa surgery and chemo. Cancer cells go dormant after treatment and decide to get going again for unknown reasons years later. It is just the way it is and doctors can not explain it or what to do to prevent it. I suppose it is like shingles which is dormant chicken pox that re-activates somehow later in life except we have vaccines for that now.

I had adjuvant radiation therapy 5 months after surgery. The 2019 rule is/was 35-40 treatments at approx. 1.8Gy per session with IMRT/IGRT. When I asked, radiation oncologist (RO) said SBRT (3-5 sessions) and proton beam were not applicable with no hesitation. My interpretation is the "mop up" nature of radiation to the area around where the prostate was does not benefit from targeted treatment like the prostate would and that the many treatments at lower dosage does the best job of uniform application to a larger volume with least side effects based on my discussions with RO.

I only had ED after surgery going into radiation at 5 mos and knew that it would probably not get better after that. I had some minor side effects during and shortly after ART which was mainly fatigue and some increased urgency to go to the bathroom. All resolved within a month or two so not sure there should be a lot of concerns with SRT with modern equipment and methods but everyone has a different deal and those are questions for RO based on your current conditions.

After so much time, I would not try to guess what the cancer is doing or where it is. Your PSA of 0.22 is really low for any scans to show anything reliably so the scans you have do not mean a whole lot. However, you do know that something is going on and the current doubling time appears to be less than a year. I agree that seeing a urologist/oncologist who specializes in prostate cancer spread in conjunction with your other doctors would be reasonable to get a balanced opinion.

You might be inclined to wait for another PSA soon or in 3 months to see how much it goes up. If it jumps up enough then you get another PSMA scan (different tracer?) to see if lymph nodes or local area metastasis shows up. There are two philosophies on secondary treatment: 1) blast away at everything locally as soon as possible and hope you get the cancer with a random shot before it spreads or 2) do constant scans until one shows a target to shoot at and proceed with some guided accuracy. A lot of this depends on the point of view of the doctors you are dealing with and what your are comfortable with.

Thank you all for your reply's.
You have mentioned several things that I had not thought about. For some reason I was thinking radiation oncologist only, had not considered a medical oncologist. Another thing mentioned is the possibility that the cancer may already be in the bones somewhere. If this is the case, radiation to the prostate bed would not be a cure and would have some level of side affects in addition to dealing with the cancer. Any thoughts on what PSA level would show the cancer location on a scan?

I had another PSA test a couple of days ago, will find out the results tomorrow. In previous discussions with my urologist I asked him what he would do in this situation. He said he would want to know where the cancer was before doing any radiation. I tended to agree with him.

The closest large medical center is the Mayo Clinic in Scottsdale AZ which is about 8 hours away.
I think I may make an appointment to visit with their cancer team for additional direction on possible next steps. I have had friends who passed with prostate cancer in the bones and have always hoped that I would not have to deal with that. Hopefully there are now treatment's that can hold the cancer at bay long enough to die with the cancer instead of from the cancer.

Thanks again for your input.

As you can see from my signature, I had reocurrence after a number of years. I had salvage radiation 40 treatments IMRT/IGRT on the Calypso machine (72GY). Since then, PSA dropped to undetectable and has stayed there for 3 years. Side effects were minimal (some fatigue and constipation). I already had ED, so that didn't change.
When I had the treatment, I directly questioned the radio-oncologist about ADT. He strongly recommended against it, as he felt it was not necessary nor desirable with my PSA history.
So it has worked out extremely well so far without ADT. Just fine with me.

That's super interesting research you provided, 81 GyGuy. So I assume during this "dormancy" period, which can last many years, that the cancer cells are not growing or multiplying - thus not releasing any measurable PSA.

But I've often read in Pca expert books that the longer one goes in an undetectable category - that the probability of a recurrence decreases. So after a 10 year remission it would seem the odds would be in the patient's favor. I wonder if the data shows what % of those at high risk recurred after 10 years in an undetectable status?

Plus, I've read that a recurrence after many years have passed are generally less severe and it's not uncommon that the slow-growing tumor might not require treatment.

Amazing that the beast can rear it's ugly head after 10 years and suddenly turn aggressive.

Never out of the woods.

I endorse your idea about consulting with a medical oncologist ~ that decision, for me, was transformative ~ and my medical oncologist opened many doors, where past doctors saw only brick walls.

Remember, too ~ within the Mayo Clinic system ~ oncologists can and do consult with each other.

As you can see from my medical history, shown below, I have been well served by Mayo Clinic, along the way. I first met Dr. Kwon in 2015.

Keep in touch with us here ~ the support found here has no bounds!

With my best ~

CYCLONE ~ # Iowa State University

Below is an article that gives recurrence statistics for a variety of cancers, including PCa at ten years post-prostatectomy.

From article:

Cancers with High Recurrence Rates: Glioblastoma 100%, Ovarian 85%, Soft tissue sarcomas 50% (100% for late stage cases), Bladder 50%, Pancreatic 36-46%.

Cancers with Low Recurrence Rates: estrogen receptor–positive breast cancer 5-9%, Kidney 13%, early-stage osteosarcoma 11-12%, Hodgkin's lymphoma 10-13%, Low-risk childhood acute myeloid leukemia 9%.

The article then presents a table giving recurrence rates for numerous forms of cancer.

Of interest to us:

Prostate cancer (after prostatectomy at 10 years):

24% for low-risk disease
40% for intermediate-risk disease
48% for high-risk disease

But the article also issues a useful caveat:

"Many estimates of recurrence rates do not take into account newer treatment options, which is important to consider, particularly when new anticancer therapies are being continuously approved for multiple cancer types. Recurrence rates, therefore, should be viewed as estimates that can vary between individuals."

https://www.cancertherapyadvisor.com/home/tools/fact-sheets/cancer-recurrence-statistics/

And this is also encouraging:

"Approximately 20 to 30 percent of patients with prostate cancer will show signs of recurrence at some point in their lives. However, the relative survival rates remain high; 94 percent of patients live at least 15 years after their original diagnoses."

From:

https://moffitt.org/cancers/prostate-cancer/recurrence/#:~:text=prostate%20cancer%20is%20highly%20treatable%20but%20thought%20of,at%20least%2015%20years%20after%20their%20original%20diagnoses.

Thanks again, 81 GyGuy. Helpful information.

But I would like to know the recurrence rates for those Pca survivors who remain PSA undetectable for 10 years following first line treatment (RALP or RT). How many relapse starting in Year 11 or forward?

I was unable to find research data on it, which surprised me. It seems like an important piece of information both for doctors and patients.

TJ123 -

Okay, here's something that I think comes closer to answering your question.

That is, if we start with these parameters:

Patient was diagnosed with PCa
He had first line treatment (RALP or RT) for it.
He is now in year 1 (2, 3, etc.) post-treatment,

then what is the probability that he will experience recurrence of PCa in year 1, or in year 2, or later?

Well, there is a tool in the form of the Han Tables, which provide a calculator that produces an answer, although a bit limited, to this question, as follows:

" ... based upon PSA, surgical Gleason score and pathological stage, recurrence probability is calculated at 3, 5, 7, and 10 years following surgery."

(from website below).

The limitations are that it is for surgery cases only (I didn't locate one for RT) and it calculates only for, as noted, years 3, 5, 7, and 10 following surgery. But it's helpful for what it does.

It's designed to function in preoperative and postoperative modes, so clearly we would use the postoperative mode.

Here it is, available for calculations, using the specific values one cares to enter into the calculator:

https://www.hopkinsmedicine.org/brady-urology-institute/conditions_and_treatments/prostate_cancer/risk_assessment_tools/han-tables.html

While limited, I read that it does have a good reputation for being reliable for what it does. (This seems to be confirmed by a lengthy discussion at end of above article on how this calculator was developed).

I think Mayo will want to do another PSMA scan as you PSA is moving into the range where results are better. My guess is that ADT would adversely affect PSMA scans as it reduces PSA activity so there may be a reason not to take ADT until another scan is done.

Your PSA is rising fairly quickly so I am hopeful they find something with another scan and you can treat the source.

Hello, 1Guyster ~

I have been on continuous forms of ADT injections since diagnosis in 2013.

Working with my oncologist, we tried 3 forms of ADT until we got my testosterone down below 7.

In my case, that's what has helped keep my PSA controlled.

Your testosterone is still "high" ~ it's providing extra "fuel for the fire" ~ feeding hormone-dependent cancer cells.

My oncologist carefully led me to the form of ADT that worked to suppress my testosterone. You can see my medical history and treatments shown below my signature.

I am also served by Mayo Clinic ~ the center located in Rochester, Minnesota.

Rely heavily on the expertise of your medical team. They will lead you forward.

An ADT injection may be the first step, to knock that testosterone level down, as a step towards stopping your rise in PSA.

Keep in touch with us here ~ do not underestimate the stockpile of weapons that your doctors have in the castle armory, in the battle we all fight together.

Grab that silver sword and shield & stand ready to walk onto that battlefield.

I can't promise you it will all be easy, but I'm about to take my first step into my tenth year of survivorship, and I can assure you all my treatments have carried me this far.

I taught school all day yesterday and went on a trail walk at sunset last evening and making plans for Labor Day weekend & the kick-off of the Iowa State CYCLONE football season. THAT'S living!

Stay vigilant, remain proactive, stay determined ~

CYCLONE ~ # Iowa State University

A proactive plan!

As you know, I have been well served by Mayo Clinic!

I think the multi-tiered treatment approach will pay dividends ~ attacking the cancer in various ways, for a synergistic effect!

We're here to support you through treatments!

With my best,
CYCLONE ~ # Iowa State University