Are all treatment options given at diagnosis?

Posted by layingthegroundwork @layingthegroundwork, Jun 21 3:57pm

First, I want to wish all of you a very happy Father’s Day!
I’m posting today because there is a recurring question on my mind that I wanted to open up to the group. When I was first diagnosed with prostate cancer, the doctors did a great job explaining that I had a very low-grade type. However, they didn't really walk me through the alternative treatment options.
I’m not necessarily saying I would have made a different choice—I am comfortable with having chosen active monitoring over immediate treatment. Still, it bothers me that I wasn't told what those other treatments were, or what I would be up against if my cancer ever progresses past a certain stage.
Even though I can’t change the past, I still find myself wondering if my choice would have been different if I'd had all the facts. Has anyone else experienced this kind of gap in their initial diagnosis? How do you handle those "what if" thoughts?

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

I remember 5 years ago on my initial visit for endocrine and urology issues. The urology issue was growths on both kidneys for which removal was the treatment. At that time the options were surgical removal or cryogenic [freezing] treatment. When the time came I chose surgical since cryo was about 95% effective and could resuult in retreatment.

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As my RO told me, we doctors are making educated guesses. By the way, she was trained at a center of excellence as were all the doctors that I reached out to for multiple opinions. Doctors are dedicated but they absolutely make mistakes, sometimes at the expense of their patient. My suggestion is seek multiple opinions, with whatever tests you have done, utilizing video telehealth calls. Most hospitals offer "second" opinions that way.

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Similarly, my urologist didn't walk me through all the alternative treatment options.

When I was diagnosed with prostate cancer in April 2012, my first comments to my urologist were, “I don’t know anything about prostate cancer so, I’ve got a zillion questions to ask before you cut anything out of me, or bombard me with radiation, or inject toxic chemicals into me……” That set the tone for our future discussions and my priorities.

Having chosen active surveillance (I was on active surveillance for 9 years), I found that it was up to me to ask the questions, do the research, self-advocate, share in the decision-making, and ask for referrals.

Urologists know mostly about surgery, radiation oncologists know mostly about radiation, etc…. So, I asked my urologist for referrals:
> focal therapy (cryo; HIFU; laser ablation)
> internal radiation (LDR; HDR)
> external radiation: SBRT (Cyberknife; TruBeam), IMRT, & Proton.

I spent much time and researched the treatments, interviewed the specialists, became a “student of prostate cancer” (as I call it), and ultimately made my own treatment decisions, as well as coming up with a tentative plan in case of recurrence.

In the process, we had quite a few discussions. We weren’t always in agreement on the treatment path. When their argument was stronger than mine, we went with their recommendation; when mine was stronger than theirs, we went with my recommendation. We all worked together. I had the final sign-off with any action we took - self-advocacy and shared decision-making.

This (I found) was just part of the learning process, just as I’ve done for any other illness, disease, or illness that I’ve had in recent years (and had the time to research, like there almost always is with prostate cancer).

Having been fully informed, I’m confident I’ve made the right choices given the information that I had available at the time.

Never any “what if” thoughts.

(“You go to war with the army you have, not the army you wish you had.”)

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Profile picture for brianjarvis @brianjarvis

Similarly, my urologist didn't walk me through all the alternative treatment options.

When I was diagnosed with prostate cancer in April 2012, my first comments to my urologist were, “I don’t know anything about prostate cancer so, I’ve got a zillion questions to ask before you cut anything out of me, or bombard me with radiation, or inject toxic chemicals into me……” That set the tone for our future discussions and my priorities.

Having chosen active surveillance (I was on active surveillance for 9 years), I found that it was up to me to ask the questions, do the research, self-advocate, share in the decision-making, and ask for referrals.

Urologists know mostly about surgery, radiation oncologists know mostly about radiation, etc…. So, I asked my urologist for referrals:
> focal therapy (cryo; HIFU; laser ablation)
> internal radiation (LDR; HDR)
> external radiation: SBRT (Cyberknife; TruBeam), IMRT, & Proton.

I spent much time and researched the treatments, interviewed the specialists, became a “student of prostate cancer” (as I call it), and ultimately made my own treatment decisions, as well as coming up with a tentative plan in case of recurrence.

In the process, we had quite a few discussions. We weren’t always in agreement on the treatment path. When their argument was stronger than mine, we went with their recommendation; when mine was stronger than theirs, we went with my recommendation. We all worked together. I had the final sign-off with any action we took - self-advocacy and shared decision-making.

This (I found) was just part of the learning process, just as I’ve done for any other illness, disease, or illness that I’ve had in recent years (and had the time to research, like there almost always is with prostate cancer).

Having been fully informed, I’m confident I’ve made the right choices given the information that I had available at the time.

Never any “what if” thoughts.

(“You go to war with the army you have, not the army you wish you had.”)

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@brianjarvis

I did not get any options from my urologist nor was I told the grade of my cancer.

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Profile picture for pesquallie @pesquallie

@brianjarvis

I did not get any options from my urologist nor was I told the grade of my cancer.

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@pesquallie That does happen sometimes. So, after researching my diagnosis, I asked. Much of the details were already right there in my PSA test report, MRI report, and biopsy report. Beyond that, it was up to me to ask.

As patients, it’s up to us to ask questions.

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For my kidney grwoth the options were few, but definite. Excise while it's possible or face losing the kidney. Cryosurgery wasn't 100% assured that it wouldn't come back. Got one on the the other kidney that's on the watch list.

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I just got diagnosed and have a Gleason score of 6, PSA 3.9. We are monitoring thus far. However, at this stage, I think that I have a chance to try alternative treatments. I found these alternatives to fight Prostate Cancer

I have been told to preserve the prostate gland-as long as it does not kill the gland it should be ok. Check PSA every month.

1. Photo Dynamic Therapy (PDT)
Are there good evidentiary studies that can prove this? What are the pros and cons?

2. CRYOTHERAPY
Apparently, they freeze the prostate? The Cancer? I was told to make sure the freezing does not kill the prostate. Are there good evidentiary studies that can prove this? What are the pros and cons?

COVERED BY INSURANCE

3. Ivermectin and MEBENDAZOLE
There are studies out there which show that this therapy can stop growth, shrink tumors and some that kill the cancer fully. Are there good evidentiary studies that can prove this? What are the pros and cons?

4. Vitamin C IV: Allegedly can kill cancer at high levels.
Are there good evidentiary studies that can prove this? What are the pros and cons?

5. Recommends Androgen Deprivation Therapy
This removes Testosterone with high doses of Estrogen, trying to starve the cancer of testosterone. Are there good evidentiary studies that can prove this? What are the pros and cons?

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Profile picture for mpetermax @mpetermax

I just got diagnosed and have a Gleason score of 6, PSA 3.9. We are monitoring thus far. However, at this stage, I think that I have a chance to try alternative treatments. I found these alternatives to fight Prostate Cancer

I have been told to preserve the prostate gland-as long as it does not kill the gland it should be ok. Check PSA every month.

1. Photo Dynamic Therapy (PDT)
Are there good evidentiary studies that can prove this? What are the pros and cons?

2. CRYOTHERAPY
Apparently, they freeze the prostate? The Cancer? I was told to make sure the freezing does not kill the prostate. Are there good evidentiary studies that can prove this? What are the pros and cons?

COVERED BY INSURANCE

3. Ivermectin and MEBENDAZOLE
There are studies out there which show that this therapy can stop growth, shrink tumors and some that kill the cancer fully. Are there good evidentiary studies that can prove this? What are the pros and cons?

4. Vitamin C IV: Allegedly can kill cancer at high levels.
Are there good evidentiary studies that can prove this? What are the pros and cons?

5. Recommends Androgen Deprivation Therapy
This removes Testosterone with high doses of Estrogen, trying to starve the cancer of testosterone. Are there good evidentiary studies that can prove this? What are the pros and cons?

Jump to this post

@mpetermax, I will respond to items 3 and 4.
Ivermectin and mebendazole are currently in early studies. Here's some guidance from Mayo Clinic and a related discussion:
- Mayo Clinic on use of ivermectin or other dewormers to treat cancer https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-on-use-of-ivermectin-or-other-dewormers-to-treat-cancer/

- Ivermectin for Prostate Cancer? (Being studied) https://connect.mayoclinic.org/discussion/ivermectin-for-prostate-cancer/

There are still no large, controlled clinical trials that have shown a substantial effect of vitamin C on cancer, but some preliminary studies do suggest there may be a benefit to combining standard treatments with high-dose IV vitamin C. Until clinical trials are completed, it's premature to determine what role vitamin C may play in the treatment of cancer. More info from Mayo Clinic
- High-dose vitamin C: Can it kill cancer cells?https://www.mayoclinic.org/diseases-conditions/cancer/expert-answers/alternative-cancer-treatment/faq-20057968
- IV Vitamin therapy: Understanding the lack of proven benefit and potential risks of this health fad https://mcpress.mayoclinic.org/living-well/iv-vitamin-therapy-understanding-the-lack-of-proven-benefit-and-potential-risks-of-this-health-fad/

Information about things like high-dose vitamin C and de-wormers for cancer circulate social media and even amongst one's personal social circles. I'm glad you're asking for the real evidence of clinical studies.

For everyone, here's another useful article to help evaluate information you may read or that well-intention family and friends may tell you about:
- How to spot health misinformation https://mcpress.mayoclinic.org/living-well/how-to-spot-health-misinformation/

Read more about treatment options for prostate cancer, including active surveillance, PDT, cryotherapy and ADT (hormone therapy) here https://www.mayoclinic.org/diseases-conditions/prostate-cancer/diagnosis-treatment/drc-20353093

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Profile picture for mpetermax @mpetermax

I just got diagnosed and have a Gleason score of 6, PSA 3.9. We are monitoring thus far. However, at this stage, I think that I have a chance to try alternative treatments. I found these alternatives to fight Prostate Cancer

I have been told to preserve the prostate gland-as long as it does not kill the gland it should be ok. Check PSA every month.

1. Photo Dynamic Therapy (PDT)
Are there good evidentiary studies that can prove this? What are the pros and cons?

2. CRYOTHERAPY
Apparently, they freeze the prostate? The Cancer? I was told to make sure the freezing does not kill the prostate. Are there good evidentiary studies that can prove this? What are the pros and cons?

COVERED BY INSURANCE

3. Ivermectin and MEBENDAZOLE
There are studies out there which show that this therapy can stop growth, shrink tumors and some that kill the cancer fully. Are there good evidentiary studies that can prove this? What are the pros and cons?

4. Vitamin C IV: Allegedly can kill cancer at high levels.
Are there good evidentiary studies that can prove this? What are the pros and cons?

5. Recommends Androgen Deprivation Therapy
This removes Testosterone with high doses of Estrogen, trying to starve the cancer of testosterone. Are there good evidentiary studies that can prove this? What are the pros and cons?

Jump to this post

@mpetermax I think you'll appreciate connecting with other men who are on active surveillance treatment in these related discussions:
- Active Surveillance As A Choice?https://connect.mayoclinic.org/discussion/active-surveillance-as-a-choice/
- Latest Evidence on Active Surveillance Interventions https://connect.mayoclinic.org/discussion/latest-evidence-on-active-surveillance-interventions/

See all: https://connect.mayoclinic.org/group/prostate-cancer/

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Profile picture for mpetermax @mpetermax

I just got diagnosed and have a Gleason score of 6, PSA 3.9. We are monitoring thus far. However, at this stage, I think that I have a chance to try alternative treatments. I found these alternatives to fight Prostate Cancer

I have been told to preserve the prostate gland-as long as it does not kill the gland it should be ok. Check PSA every month.

1. Photo Dynamic Therapy (PDT)
Are there good evidentiary studies that can prove this? What are the pros and cons?

2. CRYOTHERAPY
Apparently, they freeze the prostate? The Cancer? I was told to make sure the freezing does not kill the prostate. Are there good evidentiary studies that can prove this? What are the pros and cons?

COVERED BY INSURANCE

3. Ivermectin and MEBENDAZOLE
There are studies out there which show that this therapy can stop growth, shrink tumors and some that kill the cancer fully. Are there good evidentiary studies that can prove this? What are the pros and cons?

4. Vitamin C IV: Allegedly can kill cancer at high levels.
Are there good evidentiary studies that can prove this? What are the pros and cons?

5. Recommends Androgen Deprivation Therapy
This removes Testosterone with high doses of Estrogen, trying to starve the cancer of testosterone. Are there good evidentiary studies that can prove this? What are the pros and cons?

Jump to this post

@mpetermax

The best thing you can do for a Gleason Six is active surveillance. Getting an MRI every year. Maybe another biopsy if it finds something. Treatment does depend on what else was found in your biopsy, however. How many cores were taken? How many cores Had a Gleason six? If over six cores, it might be a better move to actually treat it. A lot of it depends on what else was found and how much Six was found in those cores.

Were any of these things found in the biopsy intraductal, ductal, large cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive.

You could get a decipher test or ArteraAI which could tell your chance of reoccurrence, which if very low would make active surveillance sensible.

Photo Dynamic Therapy (PDT) and Cryotherapy as you mentioned along with every other type of focal therapy may work just fine, or may have caused a reoccurrence soon. See below.

There are no pros for Ivermectin and MEBENDAZOLE, A waste of your money and avoidance of treatment if you ever need it. They have not Proven to work in testing. Vitamin C another good money burner for no known benefit. Check this site for questionable treatments https://evidence.zone/library.

At the stage, you’re at ADT doesn’t make sense. I’ve been on a for eight years, but I’ve had a serious case of prostate cancer. People with the Glea3son Six don’t have ADT unless they have a very serious case with something else going on.

At the 11/1/2025 PCRI conference the following was said by Matthew R. Cooperberg, MD, MPH Urologic Oncologist UCSF

What about focal therapy? Which includes Photo Dynamic Therapy (PDT) and Cryotherapy and more

* The energy modality matters much less than the accuracy of the imaging - which is not there yet.
* Overall focal therapy is associated with minor side effects, but high rates of recurrence both in- and out-of-field.
* Focal therapy is not really a replacement for surgery or radiation; it is better considered an adjunct to active surveillance.

Af the UCSF prostate cancer forum on 4-17-26 Dr. Cooperberg had slides with this information

UCSF Results: first 135 HIFU patients

• 54% recurrence (41% in-field)

• 4% progression by 1 year, 16% overall

• IPSS (urinary obstruction) 6 before, 6 after

• SHIM (erection function) 16 before, 13 after (p=0.11)

• Major drivers of recurrence: GG3, high Decipher

Trade-offs

• Overall focal therapy is associated with minor side effects, but high rates of recurrence

• Inadequate energy delivery?

• Inadequate field of treatment?

• New cancer development?

• Others?

• Understanding the high recurrence rates and trying to improve them is a major area of research focus.

• Focal therapy does not burn bridges: RP, RT, even additional focal therapy are possible if necessary

Summary thoughts

•Focal ablation has a growing role for very carefully selected cases.

• Side effects rates are low but recurrence rates are high. GG3 and high Decipher are warning signs, as are high PSAD and bilateral disease.

• Focal therapy is an adjunct to active surveillance; additional treatment may well be needed down the road, but these treatments are still possible after focal.

University of California Consensus

1 Focal therapy must be acknowledged to be investigational

2. Focal therapy should be done under trial or research protocols as much as possible

3. Candidates should have at least 10 year life expectancy, GG2 or low-volume GG3, stage T1 or 2, and PSA < 10 or PSA < 20 and PSAD
< 0.15

4. Candidates need an MRI-guided confirmatory biopsy before treatment

5. Follow-up biopsy at 12 months is essential

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