Questions about Active Surveillance as a treatment option

Posted by mauk @mauk, Jun 1 12:40am

My HoLEP Biopsy 3+4,
Decipher .017
nothing found in PSAM/MRI of prostate and also Pelvic region-
How to deal with the 3+4? AC or surgery? Any suggestions

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mauk | @mauk | Jun 1 6:41pm

Would this be a good candidate for focal surgery?

happydappy | @happydappy | Jun 1 6:58pm

In reply to @mauk "Would this be a good candidate for focal surgery?" + (show)

The OP's case may be a good one for focal therapy depending on lesion number, size, location and other factors. My team said I could be treated by focal therapy. But they wanted me to know that recurrence rates are higher than radiation or RP. That's where other factors besides Gleason grade and personal goals come into the decision making process.

mauk | @mauk | Jun 1 6:58pm

Also what are option of going forward--
Radiation
Surgery
RARP

westernflyer | @westernflyer | Jun 2 8:13am

In reply to @jc76 "@mauk What are your doctors recommending? There are so many factors that affect decisions like this...." + (show)

@jc76

@mauk
What are your doctors recommending? There are so many factors that affect decisions like this. Botton line do what is best for you. How is your mental health? Do you have other medical or mental conditions? What medications are you on? What is your family support and care giving? These are things your medical care givers know (or should know) versus us on MCC.

MCC is great and wish I had known about it when I was diagnosed back in January 2023. I learned so much from the experience of others and what they went through during their diagnosis and treatments.

We on MCC can you our experiences with prostate cancer and what we did and why we did this or that and hopefully provide inspirations. When prostate cancer is caught early, has not spread outside prostate, it has a very high success rate of treatments.

I had the same Gleason score as you. My original treatment plan was SBRT photon radiation and hormone treatments at Mayo Jacksonville. My R/O suggested a Decipher test and bone scan. My Decipher came back low risk and my R/O changed my treatment to radiation only. My Bone scan came back negative.

My Mayo PCP who suggested I get a second opinion at UFHTPI (proton radiation) which are one of the most expereinced and outstanding medical facilities that do proton radiation treatments. I was not on MCC at that time (January 2023) and got a seconf opinion at UFHPTI. They had me transfer my medical information (copy) before my second opionin consultation. They agreed with the Mayo diagnosis but wanted to do another test called PSMA. It came back negative.

Before I had my second opinion UFHPTI mailed me an information packed full of research on prostate cancer and treatments. It also included two books you hear about all the time one of them was the Walsh book.

After my second opinion I had another consultation with my Mayo PCP. We discussed the pros and cons of each treatment and side affects. We as a team both decided on UFHPTI and I had 30 rounds of proton radiation. I had markers and space/oar done prior to treatments. Minor side affects and my PSA went from 3.75 at time of treatments to .22 at the last time I had it tested. Coming up on my 2 year after treatment testing.

Surgery comes with so many different side affects and much more trauma on the body than radiation. Those on MCC that had the RP surgery would be more helpful with their experience with surgery and pros and cons of it. Hormone therapy also comes with known common serious side affects.

If you are having doubts about what to do and after you get your original recommendations you can always do another opinion to help you. You can also research the pros and cons of treatments on major medical sites like Mayo, Cleveland Clinic, John Hopkins, WEBMD.

UFHPTI offers a free information packet that they will fed ex to you free. It containes tons of research, pros and cons of treatments, and two free books (one is Walsh book). No pressure to come there. UFHPTI is part of University of Florida Health and all employees are state salaried employees. Their complex has 5 gantries and just underwent total upgrade to latest proton radiation equipment.

Jump to this post

2010 DIAGNOSED WITH SLOW-GROWTH PROSTATE CANCER. GLEASON 3+3. HAD TWO BIOPSIES TO VALIDATE SAME. RESULTS WERE IDENTICAL. SPEND 2.5 MONTHS AT LOMA LINDA CHILDREN'S HOSPITAL IN LOMA LINDA, CALIFORNIA. LOMA LINDA WAS A PIONEER IN PROTON RADIATION INITIALLY FOR CHILDREN WITH BRAIN CANCER. AS MOST KNOW, PROTON RADIATION IS TARGETED RADIATION, UNLIKE OTHER FORMS OF RADIATION, RESULTING IN LESS DAMAGE TO SURROUNDING TISSUE. MY PSA AT THAT TIME WAS 6.47 AND WAS INCREASING SUBSTANTIALLY EACH SIX MONTH PERIOD. SEVEN YEARS AFTER RADIATION, PSA BEGAN TO RISE. NOW EXCEEDING 6.5. HAD AN MRI AND PET SCAN AND NO CANCER DETECTED. HOWEVER, CALCIUM DEPOSITS WERE NOTICED IN THE VARIOUS AREAS OF THE PROSTATE. THE CONSENSUS IS THE POTENTIAL FOR RECURRANCE, WHICH IS NOT UNCOMMON, ESPECIALLY WITH THE AGING PROCESS. PSA'S INCREASE WITH AGE REGARDLESS. AT THIS POINT, MY DECISION IS TO PROCEED WITH ACTIVE SURVEILLANCE. RADIATION IS GENERALLY NOT AN OPTION. HORMONE TREATMENT IS AN OPTION, BUT HAS AFFECTS WHICH IMPACT QUALITY OF LIFE. THOUGHT I WOULD INTERJECT A COMMENT TO REINFORCE THE OPTION OF ACTIVE SURVEILLANCE AS AN OPTION WITH A SHORT BACK STORY. RH/FLORIDA

edinmaryland | @edinmaryland | Jun 2 9:00am

it really is a tough decision. I agree with everyone on this list and this list is great

I can just share from a RARP perspective ( had it in January)
I was very torn and could have stayed on AS however the cancer was growing.
my brother had radiation and loved it (compared to possible RARP), my uncle at 96 has had prostrate cancer for over 40 years has the radioactive seeds so that was a good choice for him

If you are a candidate for one of the focal approaches that might be a good option since if the cancer returns you can still have the RARP most likely

Bottom line, get a ton of information, get good second and third opinions, then at some point we have to just make a decision and trust in things outside of our control
I sure wish you luck

PS in terms of RARP I would do it again, however at 71 it is not a walk in the park and the side effects are significant (incontinence and ED) but in terms of cancer, I feel like it was the best choice for me

hirejohn | @hirejohn | Jun 2 9:51am

With a very slow rising PSA of 5 and an encouraging Gleason 3+3, I was leaning towards AS...until my .76 Decipher result. And even though my subsequent PSMA pet scan showed no spreading, my germline tests showed no genetic mutations and the advise as to the Decipher test and how much weight I should place on it was inconsistent at best, I couldn't get beyond that "high risk" score and very concerning family history. So I opted for RARP at a center of excellence and performed by a nationally known surgeon eight weeks ago. As others have indicated, RARP is major surgery with significant potential side effects; and I am, in fact, dealing with not insignificant albeit improving incontinence. However, with my recent bloodwork indicating that my PSA is now "undetectable" at < .02 and my post surgical pathology upgrading my cancer to 3+4, I have no regrets at this time with my decision to move forward with surgery.
As others have shared, it will be one of the most difficult decisions you'll ever have to make. But there's a tremendous amount of support from medical professionals, online materials and elsewhere, so take good advantage of that support and be confident that you are making the best decision for you.
Best of luck as you move forward with you journey.

jeff Marchi | @jeffmarc | Jun 2 10:27am

In reply to @westernflyer "2010 DIAGNOSED WITH SLOW-GROWTH PROSTATE CANCER. GLEASON 3+3. HAD TWO BIOPSIES TO VALIDATE SAME. RESULTS WERE..." + (show)

After having radiation, the rule is if you’re PSA rises two points above the lowest it ever hit after radiation then you need treatment. 6.5 is way beyond that.

It sounds like somebody is not watching your case closely considering you now have a 6.5. You really do need to do something because you may find out that prostate cancer is extremely painful if untreated.

You don’t mention how old you are, I took ADT for Eight years and stopped at 76 only because my testosterone will probably never come back So taking ADT is no longer beneficial. If my Testosterone rises to 100 I will start back on ADT. Sure, I don’t like the side effects, but I’m alive and undetectable after 15 years And four relapses. ADT will stop your cancer from growing and probably shrink it.

Not uncommon for the PET scan to show nothing. If the radiation you had only targeted the prostate, then you can have the prostate bed radiated, A likely spot for the Rising PSA.

Be aware that the PSMA Pet scan Can only see metastasis that are larger than 2.7 mm. In some cases they can’t even see them if they’re 5 mm or below. You could have metastasis that just cannot be detected yet. The PSMA pet scan can also not see metastasis that do not produce PSMA. About 10% of people have metastasis like that and you need a different pet scan to see them, Not saying that you but something to consider.

airborn | @airborn | Jun 2 10:31am

AS is appropriate. Radical treatment for 3+4 G7 is criminal, especially if the % of GG 4 is low. Find out your percentage of grade group 4 in the G7. If you had a second opinion on the pathology at a PC specialty center like John Hopkins you know that number. Active surveillance all the way!

westernflyer | @westernflyer | Jun 2 12:04pm

In reply to @jeffmarc "After having radiation, the rule is if you’re PSA rises two points above the lowest it..." + (show)

Thanks for stopping in. I have TriCare for Life as a retired US Army officer. I do have an appointment next month. I use the VA currently, and they provided the scans..Let's see what the urologist says..I already have an account with Mayo in JAX, so I may request another opinion aside from my own soon.

happydappy | @happydappy | Jun 2 3:56pm

In reply to @northoftheborder "As I've mentioned in other threads, in many ways a borderline prostate-cancer diagnosis seems much harder..." + (show)

I'm one of those people in the 3+4 limbo area. It is stressful because when I was 3+3, it was easy as AS was the only option. But once I got a new lesion and biopsy report of 3+4, a whole range of options were presented and none of my team members would give a definitive answer but rather spoke of risks and probabilities. For those of us in this realm, I believe a lot of grace is needed, decisions should be based on secondary factors, no one should push one treatment option over another, and treatment decisions should be respected.