Active Surveillance or Surgery?
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This is just my opinion. You gotta do what you gotta do.
I'm almost exactly like you except that I'm 59 years old. I was diagnosed a year ago, Jan/23, after high PSA test; 7.4 (but it's jumped around since from 4 to 9) which led to a biopsy. I had a 3+3 and a 3+4 core both <5%. I had a second opinion done at Johns Hopkins and it came back with three positive biopsies all 3+3 <5%. Needless to say I was freaking out. Hearing "you have cancer" is very devastating. My first thought was to get it removed, but I listened to the voice in my head and decided to start researching.
Since then I have found that there's a huge agreement that 3+3 is a cancer, but being cancer it is the "best" type you could have in your prostate. Research on 3+3 suggests it does not metastasize. All indications are that it doesn't kill you. You'll die with it. Not from it. After reading/watching video of easily a 100 hours of information over the last year, I've come to the conclusion that 3+3 is 100% an active surveillance choice.
Active surveillance does not mean that you can forget about it though. It means quarterly PSA tests. It means yearly MRIs. It means getting healthy and eating right. Less/no booze. Removing processed foods and sugars out of your diet, etc.. It's like having a kid you have to take care of for the rest of your life. Sucks some times, but no big deal!
Over the last year I have chilled out about the situation I'm in with cancer and I'm grateful that it's only a 3+3 at this time. My advice to you would be to stay on active surveillance because the outcomes of surgery or radiation will negatively change your life for our level of trouble. At this point the medical field says there's no need to do anything with 3+3 except watch the prostate to see if other more serious cancer is found. Us 3+3 only guys are blessed because we have time on our side. Use the time to research and be positive.
A positive affirmation for my situation is, I just had the results of my second prostate mpMRI yesterday Feb, 21 2024 and it showed no lesions. My prostate is getting bigger, BPH, and some inflammation, but no detectable lesions/tumors. My urologist sent me a note that said we're good until July... Rinse and repeat.
For some good knowledge poke around here. https://pcri.org
Good luck in your journey.
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Hi, thank you for taking the time to share your story with me. When I was first diagnosed a month ago I had my mind made up I was going to have my prostate removed. I just wanted the cancer out, but after finding this site, and hearing from people such as yourself, and spending many hours reading and watching videos about 3+3, I have decided to go on Active Surveillance as well. I still have moments when I start to get intrusive thoughts about having cancer, but then I take a deep breath and try to relax. Maybe if I can get a few PSA.'s and Mr i's with no changes under my belt it may get a little easier. Im glad you had great news yesterday! Wishing you the best of luck in the future!
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I was diagnosed as Gleason 6 in 2009, and have had zero progression of my pathology. Why risk the often lifelong damage from interventional treatment if you don’t need it?
The new guidelines from the American Urological Association and the American Society of Clinical Oncology state that active surveillance is the preferred treatment for low risk prostate cancer. They rate that as supported by Level A evidence.
However, first biopsies often miss higher grade cancers, so an MRI and a targeted confirmatory biopsy within six months is advised to be sure that you ate correctly diagnosed.
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Hello, thank you for sharing your story, that is great you've had no progression in 15 years! Stories like yours are what convinced me to go with AS instead of treatment. When I was first diagnosed a month ago I just wanted to have my prostate removed as soon as possible, but after spending hours researching and finding this site and hearing from people that also have a gleason 6, I am going to hold off on treatment for as long as i can. I requested a second reading of my biopsy and plan on getting another MRI soon to confirm the gleason 6. Wishing you continued success with your active surveillance.
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Been on AS 15 years.
Some of the information you received was excellent.
One of the posters, neil recommended attending a zoom support group at the Prostate Forum of Orange County. As the co-moderator of the support groups , I am flattered . There are two support groups held each month, the second and fourth Tuesday of each month at 5 pacific time. The second Tuesday is oriented toward newly diagnosed, and the fourth Tuesday toward advanced sharing, You, and all are welcome to attend. All free. Check out the website.
“Try this site, they have a monthly conference for the newly diagnosed. I still like to drop in, if I have a PSA bump or another question its great to have help. There is a retired ( I think ) Urologist who attends who has been on AS for many years so he knows from the doctors and patients side. You will also have exposure to folks who experience more advanced disease which is challenging but very educational for our journey https://www.prostateforum.org/“
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Hello, and thank you for your comment. This site really helped talk me off the ledge and save me from rushing into a possible unnecessary surgery. Thank you for the invite, I definitely plan to attending the newly diagnosed support group. I am curious to get some feedback on Testosterone Replacement while on AS. I have been on TRT for many years, and my urologist told me to stop immediately when I was diagnosed. It's been a little over a month and my energy level is dropping by the day. I've heard very mixed opinions about TRT with prostate cancer. I'd love to start back, but not at the risk of "fuling the fire"
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Hi, I noticed you said you have "an additional spot of 3+4 with less than 5% of 4" and yet are still doing AS. This is of great interest to me because I also have that exact situation along with 3 cores of 3 + 3. So from your research having the little bit of 3 + 4, it's still okay to go with AS? If I just had 3 + 3, I would definitely stick with that but even having the small amount of 3 + 4 is making me question that.
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Good morning, I know your question about the 3 + 4 was not for me, but have you considered taking the Prolaris gene test? I believe if you test negative, you are considered better candidate for active surveillance. I know that's the case for 3+3, but not 100% sure about 3+4. You may want to run that by your doctor to get his input.
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I too have a similar situation 3 grade 6 cores and a tiny bit of 3+4 less than 5%. I am on second year of AS but others have gone much longer. See note below from John Hopkins. I did do the Prolaris test which was favorable. I do quarterly PSA’s at my request instead of 6 months
According to the American Society of Clinical Oncology, patients with low-risk, low-grade disease (a Gleason score of 6) can consider active surveillance. It may also be an option for patients with a Gleason score of 7. Patients within these categories may choose to postpone prostate cancer treatment because of its associated risks and side effects.
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My urologist did say it's possible I could try some AS with PSA tests every 3 months. He didn't seem concerned about the perineural invasions. I asked about the genetic test and he didn't know. I'll be seeing two other urologists next month to get second and third opinions. Thanks for sharing your experience. I have a lot to think about.
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Hi,
I am glad you are getting other medical consults. PNI in my humble non medical opinion is nothing to mess with, do some research on it. PNI cancer is ready to leave the barn……..
Dave 3+4
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I've done quite a bit of internet sleuthing about the perineural invasions. Frustratingly, I've read articles stating they are very concerning and other sources say they're largely irrelevant. I'll definitely be mentioning my concerns when I get my second and third opinions from different urologists next month.
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Genetic testing of biopsy done. Prolaris"
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