(In)Active Surveillance

[Nwdx]

I had a 21 mm tumor one side only that was discovered via rectal ultrasound over a year ago. PSA was 6 and ignored it, this was 8 years before then 17.9 after taking a random blood test which I didn't do any for those years. So researched online for months about treatment options, asked questions on the advanced forum, read all the horror stories, posted and had quite a few people give me a hard time...lol. whatever. Had some DM recommendations of supplements.

So the Mod asked me to go here since I wasn't metastatic, but nobody posts here much.

I have refused to see any Dr's., No biopsy, since I have no plans for treatment and decided against any form of treatment due to high risk of ED, incontinence, etc, also my age and other health issues.

So reluctantly changed to liquid mostly diet with fish/seafood, and threw out blood pressure pills and hoping for the best with positive activities, exercising, lost 60 lbs, stopped eating standard junk foods, added a bunch of supplements. Feeling great, still no side effects and hope to have none. I am living with this thing hanging over me, yet truly believe food is everything and nobody talks about lifestyle, food and diet, etc in all these randomized numerous studies. There is no money in behavioral change for the system, so no studies.

The NEJM 15 year study woke me up- as outcomes of Surgery versus Radiation vs active surveillance were so close- to me it makes no sense to risk being damaged by a procedure. Even a Urologist channel from Cedars Sinai talked about AS, treatment risks and he is a surgeon. I have also read that this disease does not always morph off from indolent to aggressive

It would be useful to compare notes here with anyone who has similar thoughts about avoiding conventional for profit treatments and alternatives. I am easing into using Ivermectin.

Positive feedback and alternative supplements, success stories, etc that sort of input welcome!, but please don't try to convince me to change my mind about going to a Urologist.

[aceace12]

good luck

[Nwdx in reply to aceace12]

Thanks.

[ironmanburg]

I am 72 years old and have been on active surveillance for prostate cancer since my diagnosis in August 2021, though I likely had it before my first MRI in 2020.

Over the years, I have undergone:

2 biopsies:

The first showed 3 cores of Gleason 3+3 and 2 suspicious cores.

A confirmatory biopsy a year later showed 1 core of Gleason 3+3 and 1 suspicious core.

5 MRIs and numerous PSA tests.

PSA and MRI History:

My PSA has fluctuated, rising from 3.9 in 2018 to 12.7, then dropping to 11 this year.

Earlier MRIs indicated:

Bladder outlet obstruction and BPH (benign prostatic hyperplasia)

A probable subcentimeter utricle cyst, initially rated PI-RADS 2.

My latest MRI:

Upgraded the utricle cyst to PI-RADS 3 (suggesting slight growth).

Did not mention the bladder outlet obstruction or BPH.

Showed no concerning changes in surrounding areas.

Urologist Consultation:

When I brought up these findings with my urologist, he had no clear answers. Instead, he categorized me as intermediate-unfavorable risk due to my PSA increase and suggested a prostatectomy, which I declined.

I also questioned whether my cycling 5,000 miles per year for over 20 years might contribute to elevated PSA levels (possibly due to prostate irritation), but he had no response.

New Care Plan at Moffitt Cancer Center:

I have since transferred my care to Dr. Michael Poch at Moffitt Cancer Center in Tampa. I saw him in July 2024, and he recommended continuing active surveillance with PSA tests at the visit and another in six months.

My PSA in July 2024 was 21.38.

At my follow-up January 2025 it had dropped to 17.9, a 17% reduction.

Lifestyle & Supplements:

Before the second PSA test, I began taking the following supplements:

Tomato sauce

Turkey tail mushrooms

White button mushrooms

Cranberry powder

Additionally, I have been consuming one ounce of raw pumpkin seeds daily for over a year, which has significantly reduced my nighttime urination frequency from 3–4 times per night to 1–2 times.

I also read the 15 year study and see no reason to undergo treatment if the outcome would be be the same. Who knows for sure?

I also personally knew 3 individuals who died of prostate cancer, Two white athletes who died at 69 and 76 years old and a sedentary black who died at 69.

Good luck.

[Nwdx in reply to ironmanburg]

Thank you for the input. Yes- the "No clear answers part" is what all cancers seem to have. Nobody knows, they think they are solving the problem- but as I posted on the other forum- my frank discussion with an Oncologist I met visiting my home said he was a counselor and expected only extending suffering with chemo. I watched my own father stuck in bed 3 months then expire on a morphine drip- completely different cancer.

Great, glad you are doing well. You have side effects of night time urination- which I do not really I wake once at the most. No stream restrictions of urethra or blockages that I can tell. Those mushrooms are those raw from store or capsule supplements?

Those who died, were they able to care for themselves until say the final 3 months or were they in palliative care for several years?

I realize everyone is different but curious their stories if you know them and want to post. Are you taking any other supplements or IVM? The bone spread I guess stats say to lymph and spine and pelvis area, to the hip bones- etc sure is ugly. I have talked to several and one guy lasted 3 years stuck in bed unable to walk- not for me.

[ironmanburg in reply to Nwdx]

The turkey tail is in a capsule and the white button is a powder. The old guy went quick, the other athlete had aggressive metastatic cancer and lingered for a couple years going thru different trials and the other guy lasted a while but went quickly once it spread. Check out nutritionfacts.org for some interesting follow up on different nutritional studies for various cancers.

[Nwdx in reply to ironmanburg]

Yes, thanks. Dr. Gregers videos I have watched quite a few, he backs up his narratives with studies.

[pd63]

Need a biopsy to confirm diagnosis

[Nwdx in reply to pd63]

Thanks. Agreed for sure if you want treatment- the first words out the mouth of the Ultrasound urologist is "It needs to be surgically removed"- my response? F- you. Took results and went on the research deep dive. Personally, I will maybe eventually do an MRI, but only need a biopsy if seeking decision on Gleason for standard treatment- so if a 8+ going to die faster or if 6 maybe nothing required or die slow from this or something else first. Rather not know, knowledge creates stress. The data is so ragged, variable treatments for 7 3+4, 4+3, etc. and the NEJM 15 study confirms that in my mind outcomes were so close. I also need to keep my health in other areas under control as much as I can.

[pd63 in reply to Nwdx]

Not if you want treatment but the results will confirm no treatment is needed

[Nwdx in reply to pd63]

...or confirm I am screwed and need to plan my exit. Which has been my dilemma to know or not know. I have no responsibility to anyone else- family etc.

[pd63 in reply to Nwdx]

No point in further discussion if that's your decision