Self Advocate and Do Your Own Research | Howard Wolinsky’s

[@shamrock8561]

I was diagnosed with 2 lesions both 3+4 Gleason score with only 5 percent 4. My urologist thought I should get it treated because there was some 4. I then told him I would like a decipher genomic test. He ordered it and sent my biopsy. It came back to n tge very low end of low grade cancer. I then went to see a world known specialist where I found out my sister in law worked. He read all my information and agreed with my choice of active surveillance. I was thinking of focal cryotherapy if I needed treatment which is what he specializes in at Winthrop NY Langone Hospital. He told me his honest opinion was that he felt the treatment would do more damage than the cancer so I will be on active surveillance. Glad I went for the second opinion.

[@bglrj]

This man is my hero. I went through the exact same journey with the exact same diagnosis and percentage of Gleason 6 in the exact same part of the country, Chicago. It's a jungle out there and it's a real racket.

[@tomm3410]

Thank you Howard and PCRI for being such strong advocates. I have been on AS for almost 9 years. When I was first diagnosed (with 3+3 Gleason) the doctor recommended surgery. I went for a second opinion and again was told I needed surgery. I finally went for a third opinion at Memorial Sloan Kettering Cancer Center in NYC and I was put into the AS program there by Dr. James Eastham. I almost didn't go for the third referral feeling that I would just be told to have surgery. I realize there are no guarantees in life but every time I go for my biannual AS checkup I thank my lucky stars I did go for the third opinion.

[@aero3085]

I'm 61. Six months ago urologist/surgeon personally called me, said urgent we meet, one core 3+4 =7, need immediate radical prostatectomy (which he's an expert in doing). That same day I began a 100% plant based diet. Cut: dairy, sugar, alcohol, processed foods. I then hired Dr Mark Scholz. He sent my bio slides to John's Hopkins for a 2nd look. Then he had me get an ultra sensitive PSA test after five months. (PSA went from 5.48 to 4.13). Dr Scholz scheduled me for a "Prostate Specific" MRI in five months. The potential after effects of any treatment can be nothing but a myriad of life long medications, diapers, erectile dysfunction having the testosterone of a 10 year old girl and possibly much much more. Educate yourselves Brothers.

[@anthonyshaw8698]

I totally agree!! I'm going the plant base route too. Cut the diary, and alot of meat. Meat & diary are High in IGf-1 Feeds cancer. I'm also, going to continue my exercise program, 3 times a week. I'll be 66 in two months. DRE revealed an enlarged prostate 56 cc MRI reveals 3 lesions, 4/5's But my PSA, is 2.5🤔 How strange is that. My PD, sent me to an urologist. Right away, he wants to do a biopsy. Think I'm gonna wait 6 months. Check PSA again. Hammer the diet, in the mean time, with lots of green smoothies. Kale, arugula, broccoli sprouts, green & red peppers, garlic, onions etc. 👍🎩👍

[@stevenmael1321]

April 2018, that’s when a urologist said I had cancer, before he even did a DRE! Then the exam, polyps, and your going to die of severely painful metastatic brain or bone cancer if I don’t have surgery the next day. I was traumatized and bewildered. I went home and looked up “prostate cancer support group” on the web and waited for biopsy results, which were 3+3. I scheduled and went to my second opinion, at the same clinic, who concurred with the first doctor. Then a radiology oncologist who said, why have surgery when he could guarantee to permanently destroy the “cancer”, otherwise better known as my prostate. I went to the support group and was told “you have time, no need to hurry” with a Gleason 6, and I learned of AS, and of the many men who have been devastated by the destruction of surgery, radiation, hormones and other procedures, as these doctors claim to have saved your life, then walk away like they are some sort of superhero as your life spirituals into chaos, depression, hopelessness, anxiety, hormone dependence, ED, and incontinence of both the bladder and colon, if radiation was used. I went to a forth urologist, at a different clinic, who, guess what, said no polyps, but again insisted I need surgery, because, as he stated, he “really enjoys doing surgery!” I told him, in fact I insisted on AS, which he disagrees with, but does because I am insisting on it. Five years with a consistent 1.2 to 1.4 PSA taken every 3-6 months, no lesions on any MRI, but the doctor still insist on surgery. It really is a racket. I know of two people who were diagnosed with liver cancer in the past month, both in their seventies, both went home and died almost immediately. Both funerals are this weekend. I believe that the shock of being told “you have cancer” will kill a person faster than the cancer, and it is that fear that they use to get you into the operating room ASAP, as they did to one of my cousins last year when he was told he was a six and would die. Nobody wanted to hear me say you have time, everyone told him I knew nothing and he had to get the cancer out of him now, or die. He’s lost half his body mass in just a few short months, and I will never know the true trauma he has suffered as a result of his cancer diagnosis”. Get this video to everyone you know, no matter how old they are, no matter what their prognosis is for prostate cancer. Howard is brilliant and a life saver. People need to educate themselves on their opinions. You can and should get treatments, if you absolutely want or need them, but just because a doctor says you need something is no more true than when some mechanic tells you that you need a new engine when all you really needed was a new cam sensor, which also happened to me several decades ago. Best wishes, and take care of yourself, because everyone else just wants your money.

[@stevespadachene8722]

Thank you for being bold enough to tell men the truth. We are all going to die so take control make Your decisions after getting the facts. Do not Let a doctor tell you what you must do it's your body and life.

[@TH_2212]

Thank you PCRI ! Because of your information and encouragement I got a second opinion on my prostate biopsy plus had an Oncotype test performed. The second opinion on my biopsy was given by Johnathon Epstein at Johns Hopkins and as a result, my Gleason score was reduced from a 3+4 grade group 2 to a 3+3 grade group 1. The Oncotype score was also favorable. I have gone from a probable surgery or radiation treatment to being on Active Surveillance. Absolutely would not have had the confidence to do that without you 🙏🙏🙏

[@jackarmstrong3364]

Good for you Howard. and PCRI. I am 83 and had a Gleason 9 biopsy 3 years ago I have been on Active Surveillance since then. I got off Lupron 6 months ago. My PSA now is .01 and my testosterone is >10. I believe older Prostate Cancer patients need to weigh all of their options very carefully since all treatment has serious side effects. Personally, I feel that most urologists are very quick to terminate your sex life and give you drugs that make you weaker than a 10-year-old girl. For some men that might be fine, for me it was not. Also, consider exercise and staying fit,. while on Active Surveillance

[@wayneredd6776]

Hi jack ur story sounds just like mine. I was 62 (63) Gleason 9 I went to a urologist obviously in the beginning he wanted to do surgery I was like no way as I researched it I found PCI etc. The intriguing thing about your story that I like to see is after three years your numbers stayed very low. Did u hv any radiation? I did, not at a clinic a good hospital. My psa never really got above 6.5,,

[@stevet5815]

I agree on the 2nd Opinion.. My 1st Urologist had his pathologist score my biopsy and it was 4+3/4+4 and he wanted to do surgery immediately. I went to a 2nd Urologist and had my Biopsy sent to Hopkins where it was scored 3+4/3+4 with less than 10% grade 4. After my PSMA-PET and Decipher 0.14 Ive been on AS for a year and Im getting a updated MRI in March.. thanks for your info

[@MM-sf3rl]

Thanks for sharing. I have 3+3 and 3+4 and a Decipher of 0.9% risk, T2a, PSA of 5.4. The cancer is only on one side of the prostate and all the other biopsy’s were 3+3. AS for me until further notice.

[@vimzibaiegh]

Basically it's a gamble. Some of us will take the gamble some won't. And the degree to which one is willing to gamble varies. I'll share my c-scare experience because I know how much it helps others looking for information. In 2013 my first PSA was 3.8. It went up and down after that with my Primary care physician giving me referrals to urologists which I did nothing with. You see even when it didn't go over 4, a certain percentage rise in PSA was deemed suspicious. In Jan 2020 it went to 4.3 and I asked the primary for another test in 6 mos of which the result of in July 2020 was 3.7. The test is skipped for Jan 2021. in 2022 my Dr. retired and I find a new primary and my PSA in January 2022 is highest ever at 5.83 but I don't worry as it's historically gone up and down. Then this year (Jan 2023) holy Toledo! 13.14. I agree to go to a urologist. The DRE and dip stick is normal...no blood. No symptoms. The urologist recommends MRI which will help target where they need to biopsy. I get MRI (w & w/out contrast) which turns out clear, no lesions, Rads-2 "clinically significant cancer unlikely to be present." I think the reason it wasn't a Rads-1 (which is even better) is because I have a spot on my hip. At that point I'm thinking uh-oh. But at the same time I'm optimistic about there being no lesions...but the hip, has something metastasized? Back to the radiologist facility I go to have the hip x-rayed which turns out to be nothing (mild osteoarthritis). So now with fear subsiding I'm like, maybe I should quit while I'm ahead. The Urologist states MRI can miss a percentage of cancer and still recommends the biopsy as an added precaution. I'm hesitant about a biopsy and I start stalling but I couldn't escape the PSA number. So then I went to a second urologist and ultimately another PSA test which was taken almost three (3) months after the last one. I got the second test in April 2023 (this month). I'm also given a second DRE which is again normal. I get the results from the second blood test. it's 7.16 which I consider a significant drop from 13.14. So now I'm not going to biopsy. I'm supposed to go back in a couple of weeks to the 2nd urologist to discuss the results and possibly, based on the results, another PSA in 6 mos. I like that idea a lot but part of me thinks, no mas. I mean no more PSA's unless I have significant symptoms and at that time do whatever it takes to make it better. I probably will keep the appointment but I'm anxiously glancing the exit. That's the gamble. By waiting I lose the chance at early detection. But given the swing in my PSA and clean MRI, I find myself debating the science. Therefore, if active surveillance is my path, (which is arguably the choice I made years ago) then it increases my resolve to avoid the first biopsy. Why biopsy if I'm going active surveillance? And despite my choice, I can completely understand why someone would do all they can to "find it early" and support someone else's decision to do all they can to eliminate cancer from their body regardless of the side effects given the alternative could have tragic results. I wish miracles upon anyone who needs one now.

[@edotero6331]

Great story. I have low risk and diagnosis 3 years ago, but I have had 2 biophys. The second one he missed the target I think cause he could not find cancer although he said doesn't mean I don't have it. So PSA goes down every 6 months, and he will do another biopsy next year. 3 in 5 years. He is my 3rd Dr, and I believe in him. I heard Dr Klotz talking about transparent needling. Is this coming to the States soon? Thanks again for your story, it gives me confidence I am now 63.

[@thvz1ster]

this system works even after surgery.I had my prostate removed in 2016. Even without a rising psa test, vieosRadiologists wanted to do general radiology(in pubic area). I saw PCRI videos aboiut petscans. I said to the radiologist that I want a PCma petscan first. They said no, Medicare won't pay. I got a second opinion. NO. I got a third. NOt yet. I went for my regular 3 month checkup. There was a new doctor Klimant, from a different part of the country. He said that Medicare will pay. I am getting a petscan. My only regret is that they fought me. PCRI videos made the difference for my persistence and determination.(although it was only God's grace through DR. Eiko Klimant, who knew better from his experience in a different part of the coiuntrty, and perhaps kept up with happenings better). Tom VZ

[@MyFrank71]

This gives me great hope iam Gleason 6

[@flyboyslc1]

I too am 11 years into Active Surveillance. With initial diagnosis of 5% of one core in 8 scoring Gleason 7. Just in the last few years has cancer even been visible on an MRI. Absolutely get a second opinion, and not from a urologist. Better off with an oncologist. 70 years old, and still functioning as God intended.

[@montanamike53]

For 9 years I've been on Active Surveillance with a Gleason 6 and PI-RADS 2, Glad I educated myself. Recently had a contrast dye MRI showing no change in previous MRI.

[@wayneredd6776]

That’s a fact all urologist want to do surgery it’s such an invasive surgery,, even 10 years ago with such a low scores I can’t believe it. All I have to say is three words money, money, money,!!!

[@kendavis1198]

I'am Totally getting confused here. I have a PSA of 1.92, I've had a digital exam last in 2022, and my Doctor says not to worry.( he hasn't seen a Man my age "68" with a PSA that "LOW) have Prostate Cancer????? I have to Pee a little during the night, He Scoped my Bladder and that was good. Rather Uncomfortable but went ok. He said I could get the Green Lite Laser to help with the Peeing situation but I just don't know what to do? That has some Ugly Side affects but I am just "Confused". I been thinking a Second Opinion with maybe a "Younger" Doctor?? If that makes any sense??? I don't know. I just don't know. 😰

[@MM-sf3rl]

Keep looking and educate yourself. I went to Mayo Clinic and the surgeon said RP. The oncologist said treatment. I wanted a Decipher test done (the surgeon didn’t think it was necessary) and it was 0.9% risk. The the doctors assistant communicated through the portal I could be on AS. Did this “team” even talk to each other? I recently heard of a focal therapy called Nanoknife. Used in Australia and Europe. The “team” at Mayo said I was not a candidate for focal therapy under their “standard of care”, yet I found a clinical trial they are doing at Mayo using Nanoknife. Keep looking and educate yourself.

[@nvan78]

Gleason 3+3, 3 cores positive last time I had a biopsy, PSA 11 even with Avodart. Been on AS for 4 yrs now, MRI coming up in a month or so which should reveal if there is anything else going on. Age 67.

[@daisuke6072]

ON AS after 1 core of GG3+3 0.1mm from MRI targeted and systematic biopsy. Recent biopsy disclosed 1 core GG3+4 with < 5% GG4. 2 cores GG3+3 in same area. So maybe I'm an unlucky one where the cancer changed, however as the second biopsy took more than 2x the first one's cores, I suspect it may have been hidden. But urologist immediately in panic mode: "you have to have radical treatment with two options surgery and RT", hardly any discussion of side-effects and very much played down. However due to PCRI and other sources I was educated about PC. Whilst I'm more concerned and looking at focal treatments, I feel it was quite wrong to hit panic mode even with this progression. Consulted medical oncologist who recommended more active AS for time being. The lesson is educate yourself so that you are not panicked into action without considered thought. BTW MRI identified one PIRADS 5 shadow that turned out to be all negative on biopsy, so I'm ambivalent about MRIs.

[@daveyvane]

My brother went to VA hospital where they basically bullied and scared him into radiation treatment. So he is angry with ED these years later

[@catfish24]

My psa went up to around 4.7 my urologist wanted to do a Biopsy i agreed he done the Biopsy in the hospital and I was completely put to sleep he said he would do 12 core samples when I woke up and talked with him he said he took 21 core samples and wanted me to see him in 2 weeks i went in and he said 2 of the samples came back positive for cancer he said my Gleason score was 6 a 3 plus 3 he said he wanted to send the samples off to a lab and let them look at them on a molecular level and wanted me to come back in 30 days when I went in he said the results showed it was a very low grade cancer and wants to do active surveillance. He said i was more likely to be killed in a car accident than this cancer killing me he also said it would probably be 10 years or more before the cancer would ever start to get worse but it sure is kinda scary knowing that its cancer in the old prostate but what's bothering me is i have some weard things happening like very little semen when I have an orgasm and it takes a longer time to even come out and i get up 6 or 7 times a night to pee. I thought about just going ahead and having the surgery and having the prostate completely removed that would get rid of the cancer and help stop getting up 7 times a night to pee but I worry about the side effects of surgery so what to do i just don't know yet. July 2023

[@JustaReadingguy]

Surgeons are sales people to their own services, and they want money.

[@Allessio777]

Did you mention what your PSA was at the time of the Original Diagnosis? (I'm identical to you in Gleason and Cancer cores, but my PSA is 13 and on AS).

[@HowardWolinsky]

Sure. I was 63. My PSA was 3.95. I had a single core of less than 1 mm. Yet a surgeon wanted to "cure" my cancer in the OR. I got a second opinion. The doctor said I was the poster boy for AS. It hit a peak of nearly 9 and it has settled down to 4.5. I am tested once a year. Haven't had a biopsy or MRI for seven years. I have been on AS for 13 years.

[@Allessio777]

@@HowardWolinsky Thanks...at least my Urolgist didn't want to operate! and I am on AS. But we both worry about that 13 PSA>

[@MyFrank71]

Are you still gleason 6 and psa 13?

[@Allessio777]

@@MyFrank71 Yes, although my PDA went down to 11 in the latest test. I get another Biopsy and mpMRI in the fall. I am still on Active Surveillance until those test are completed.

[@MyFrank71]

@@Allessio777 i had my second biopsy last friday my psa was 11.1, my first biopsy showed gleason 6 last august out of 17 cores 9 were positive ,hopefully iam still at gleason 6

[@badlad8361]

Top man!

[@MyFrank71]

Can anyone tell me what i should keep my vit d levels should be ? iam gleason 6 psa 10.2 ,my vit d levels are high at 116

[@anthonyshaw8698]

Vitamin D levels should be between 60 to 80. You are pretty high. Too much sun, and/or too much supplementation..

[@MyFrank71]

@@anthonyshaw8698 its not going to do me any harm having high levels of vit d

[@anthonyshaw8698]

@@MyFrank71 👍🎩👍 From my research, in the past, optimum levels, are said to be, 60 to 80...

[@jimh3595]

Lot a doom and gloom about side effects in these comments and from Howard. Suicide? Really? Sure sounds like the treatment is worse than the disease, and virtually no advances in surgery or radiation. That's more than sad.

[@norafernandez1691]

It’s ok if there is no metastasis. The Mets are the killer and not the prostatic ca. Good luck.