My Journey Begins...Decision Time

By destroycancer

1 min read

Hello Everybody!

My name is Dennis...67...Retired! I was recently diagnosed with prostate cancer in February 2021 after DRE, PSA, 4K tests led to a truss biopsy... My PSA is 1.9, which I’m told is good, but 4K came back at 22, which I’m told was high... We went right to prostate biopsy... perhaps we should’ve gone with MRI first... 12 samples taken...8 showed benign, and 4 showed adenocarcinoma... Gleason score 6, Group 1... You have cancer, Dennis! 😱😳 My wonderful spouse and I were deer-in-the-headlights though we were expecting to hear those dreaded words...

Discussing treatment options

My case was handed over to their surgeon and radiologist to discuss my options... Active surveillance was a distant 3rd option going into discussions, neither of which suggested it... my apologies if I’m getting long-winded...

The surgeon requested an MRI and additional tests on the biopsy samples... MRI came back saying hemorrhaging from biopsy blocked some imaging but no spread...

My radiologist oncologist was very convincing that giving him 9 weeks Monday to Friday he could save me the incontinence and other side effects of surgery... Thought I found the right approach... Wifey and I were onboard the R train!

Decision time

After signing financial and consent forms to implant markers and a gel device to protect the rectum, I received the other biopsy report saying I’m a candidate for Active Surveillance, after all, 😳 saying I have about a 1.7% chance of prostate cancer-killing me... Wow! I need some advice...please.

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bvjarvis1 Member
If it were me?: > 1.9 PSA is good (I would’ve stopped there until the next PSA/DRE exam.) > Yes, should’ve had the MRI first. That’s SOP these days. > (I’m not familiar with the 4K so, I can’t speak to that.) > Biopsy; 12 samples; 8 benign; 4 Gleason 6. There’s much discussion these days as to whether a Gleason 6(3+3) is “really” cancer. (Again, I would’ve stopped there until the next PSA/DRE exam.) I suppose the initial reaction may be deer-in-headlights to those words. But, you should’ve simply sat back, relaxed, (had a beer or wine or something), and thought about the situation. Do your own research before looking into aggressive treatment. Surgeon is going to say surgery; radiologist is going to say radiation. That’s not a bad thing. But, with your numbers, active surveillance should’ve been the 1st option; then, work up from there. Signing financial and consent forms means nothing; until you actually pull the trigger, nothing is final. It’s you who are making the call (and have to live with the decision). (Is this your first PSA/DRE at 67y?) Now that you have a baseline, I would come back in 6 months for a PSA/DRE and see how the numbers look then. But, that’s just me.
1. destroycancer Member
 Thanks for the response...Not my first PSA / DRE but is first time to see Urologist... Definitely stepping back for more research, see my primary and get a 2nd opinion...Ever hear of Prolaris genetic biopsy testing ? That test checks samples from original biopsy. It came back suggesting Active Surveillance.
Guy Meredith Moderator & Contributor
It looks like you are doing well and not making decisions under stress. As bvjarvis1 noted, there is some discussion now as to whether grade 3 is actually a cancer and surveillance is commonly advised at this stage. The 4K score is a predictor of the likelihood of finding cancer, but does not indicate cancer. What were the results of the MRI? Did it show signs of cancer, targets for a non random biopsy? I assume with the gel and markers you have decided on beam radiation if you decide that treatment is actually needed. If not, the gel will melt away over time. Keep us up to date. Members here are more than willing to share their experiences when you need it. We've all been there. All the very best. Guy B. Meredith, moderator. Diagnosed at age 73, Gleason (3+4). Chose radiation with ADT.
1. destroycancer Member
 Thanks for your response Guy ! The MRI mentioned diffuse biopsy hemorrhage throughout the peripheral zones rendered imaging and ADC mapping nondiagnostic... Mild BPH...Lesions found - No... Normal seminal vesicles, no suspect adenopathy or bone lesions...No other significant findings... PI RADS 2 - Clinically significant cancer is unlikely to be present... I didn’t get the markers or gel implants... Putting things on hold for now...radiologist insists on seeing me again tomorrow...also scheduled for my primary tomorrow...will be looking for an independent second opinion shortly ! Did I miss anything or do you have further suggestions ? Thanks !
Richard Faust Community Admin
Hi Dennis, I want to share with you an additional post from our contributor Len, which he wrote on our Facebook page: "Dennis, wow, that’s a tough question. From everything I’ve read, it indicates the 4K score is only applicable for PCa great than or equal to Gleason 7. My first question to you is, “Was your biopsy done with it without MRI guidance?” If without, I’d demand one with MRI guidance as a lot of higher grades have been missed in the past without it. (Mine was a Gleason 8 from the biopsy, but after the surgery and pathology had all the tumors, it turned out I had a Gleason 9.) While your PSA score is very low, we have had several guys report their aggressive PCa was caught with PSA’s below 2.0. (My Gleason 9 was caught with a 2.7 PSA.) Personally, if I were in your shoes, I’d insist on quarterly PSA tests for at least a year. Fast PSA growth, known as velocity, is also an indicator of PCa. (The reason my PCa was caught was because my PSA more than quadrupled from 0.6 for several years to the 2.7 in two years.) I don’t know how often insurance will pay for 4K testing, but I’d try to have that done quarterly if possible, but no less than semiannually. Another point is that in 10 years, only half the guys on Active Surveillance have needed treatment. But for now, I’d stay on top of testing but I wouldn’t lose any sleep over it. All the best. Len Smith Moderator PS - This is an excellent article from the National Institutes of Health (NIH) that I thought you’d find informative: <a href='https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4444768/' target='_blank' rel='noopener noreferrer ugc'>https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4444768/</a> What surprised me is the emphasis they place at the beginning of the article on over diagnosis of PCa."
1. destroycancer Member
 <inline-mention username="Richard Faust" user-id="3268931"/> Thanks for your response Richard and Len... I had a TRUSS biopsy (ultrasound guided)... I’ll keep the MRI guided option for next time... Met with radiologist again yesterday...His points were I have cancer on both sides and a nodule... I value his opinions but want a second opinion... From there went to my primary for opinion... No real opinion but agreed on getting a second opinion... Going with a top rated cancer center in Philly area for the second opinion...feel much better taking control and I now refuse to be bum rushed into a possibly bad decision... Stay Safe everybody and thanks for the support !
dele0527 Member
Dennis, the moderator Faust just hit the ball out of the park with his advice to you. You are under no obligation, watchful waiting maybe the way to go. The bleeding is normal over a short period of time after the biopsy. I head a group of 50 survivors of pc and have been involved with the group for over 20 years, we meet monthly(till covid) in n.e.pa. in that time frame we have only lost 3 members. The psa test cost less than 50 bucks even if insurance doesnt pay for it, get it done no less than quarterly as you have been advised. I have seen guys watch it for 8 years or more. If you want to treat it also consider cyro, hifu, we have had guys use both of these to treat pc with excellent results with no side effects.. i had imrt in 2002 and my psa has been below 1 for 20 years. dont let anyone rush you in a course of action act in haste and there is no repenting in leisure. best to you 
1. destroycancer Member
 <inline-mention username="dele0527" user-id="3259686"/> Thanks dele0527... I’m getting my independent second opinion from a great cancer center in Philly area first ... You and most people on prostate <a href='https://cancer.net' target='_blank' rel='noopener noreferrer ugc'>cancer.net</a> sound very encouraging...I should join a local support group as well... IMRT is an option with a gel spacer now to cut rectum trouble from the radiation... Did you have much side effects ? Turning the page to Second Opinion... Hoping for the best ! Stay Safe Everybody !
2. dele0527 Member
 <inline-mention username="destroycancer" user-id="3259745"/> had imrt before anyone thought of the gel spacer have had the rep. talk with our group and it sounds like a great new tool in the arsenal against pc. i did develop radiation proctitis after about a year, and the ro got me in to see a colorectal surgeon who did a short scope and he use a treatment he called florin(5% solution of flormaldhyde) to seal the burns, took about an hour and havent had a problem since. Local drs. who gave me a blood transfusion over the weekend told me if i ran low come back and get more blood. they didnt have a clue as to what was the problem. called ro monday morning and he had me in his office by noon and over to the colorectal surgeon in less than half an hour, done in his office, and home by super time. imrt was brand new at the time and there were only 4 places that i know of on the north east coast doing it in 2002/2003 Sloan kettering,dana, east stroudsburg u, and sayre. other than that no problems, no other side effects, and i am still chasing the boss lady who is 17 years younger than i am around. lol. Chose the best doctor, and go in with a positive, upbeat attitude. best to you
kenneth1955 Member
Hey Dennis I would do the active surveillance. You must have a slow growing cancer. I would not have had all the stuff down with a PSA of 1.9. Don't rush into anything or let the doctor try to get you to have a surgery. It will change your life Keep a eye on it and live your life for now. Ken 
1. kenneth1955 Member
 <inline-mention username="michaelboren" user-id="3266672"/> Good morning Michael. Yes surgery is a big decision and what type to have is a lot to deal with. But you have some men that do not do the research and do not pay attention to what the doctor is telling them. There are some doctors that will tell them the truth and then you have some that kind of under play the side effects. Being we are all different we all have different concerns. I know that I'm not a doctor but I try to be well informed When I say something it is my opinion and what I would do. At this point in my life ( 65 ) I will never have any surgery that will interfere with my sex life. Erections or my ejaculation. I do not care if I'm not having kids now but It is mine and it will be with me for the rest of my life. No doctor is going to tell me that I don't need it. That is not his right to say. It is mine. I don't know if at 70 or 75 I will feel any different but for now that is the way it is. I have had surgery's for BPH and other things. I was bleeding a week after one surgery and I had to have a emergency surgery to see what was the problem. I would not sign the paper for the surgery until the doctor signed that he would not remove or cut the prostate tissue for any reason. It took him 30 minutes to sign it after it was written on the paper. It turned out to be 4 blood clogs on the prostate from taking my blood thinners to soon after surgery. He had to burn them off. He got back at me. I had to have a 3 day flush so he put in a 28 fr 3 way catheter in. Boy what that something coming out. If cancer is the way I'm going out of this world I'm going to live it with no side effects. This is my life and that is my right. Do your research and do not get forced into anything you are not ready for. God love you all....Ken 
2. destroycancer Member
 <inline-mention username="kenneth1955" user-id="3271962"/>Thanks Kenneth !
destroycancer Member
Thanks for your response K55...Definitely leaning that way towards AS...Recruiting independent second opinion...Do you feel you were rushed into treatment ? 
1. kenneth1955 Member
 <inline-mention username="destroycancer" user-id="3259745"/> Hey There. I will never be rushed into any treatment I will do what I feel is right for me. That is what you have to do. The side effect of treatments are the worst. I will not give in to cancer
2. kenneth1955 Member
 I did not have cancer. I like being ready for anything. I have talked to many men that were forced into something they were not ready for. You have to get a second opinion and see what your options are. There are so many treatments out there. That is why they are other option. We are the same but we are all different. You need to find a doctor that cares. Not just about getting rid of the cancer but someone that care about you and your life. Be safe......Ken
Subdenis Member
AS is a great option and one needs to make sure it is really ACTIVE. Johns Hopkins is a model program. Unfortunately, you and I would not meet their screening requirements because of 4 cores positive. I had 4 g6 and decided to get a second opinion on my biopsy and one core was upgraded to 3+4 < 5% of the core. I felt it was too much of a gamble. And that is the decision you are making, a risk reward decision. There is strong evidence G6 does not migrate or metastasize. However, they don't always sample all the cancer spots. So there could be higher Gleason. But is you actively monitor it you can intervene in time. I wish you well. Denis
Dennis E. Golden Moderator & Contributor
As a newly diagnosed patient we are often the most uninformed medical "experts" in the room. We are weighing the impacts of a potentially life-changing decision while being overwhelmed with information and by shock and fear. Best to remember that Prostate Cancer (PCa) is slow growing and even with a high Gleason score, you still have time to get a second or third opinion. It is very easy to prior to diagnosis to say what you will or will not do. A lot changes happen after you hear the words "YOU have prostate cancer." In our support group we have men who said, I am not going to anything and I am just going to live with it. Others can not wait to get a treatment scheduled. No matter which decision you make there is no going back for a "do over." I have met men who have regretted taking one path vs the other. And then there are those who after treatment have said it was the best decision they ever made. My approach – make a decision and never look back - Go forward knowing it was the best decision based on what was known at the time.
destroycancer Member
Update - Sorry for the delay... Got my second opinion at Fox Chase Cancer Center... Oncologist had biopsy slides re-evaluated and tried going over the MRI that was given too soon after my truss biopsy...too much hemorrhaging.... So he feels I’m a great candidate for Active Surveillance 😃 and recommends no radiation or surgery unless something drastic happens... I will go back to Fox Chase for an MRI , get my PSA checked, kick the tires in September then office visit... God is Good ! 🙏🏻
1. destroycancer Member
 Good idea ! Thanks Dennis !
2. destroycancer Member
 <inline-mention username="Bob Tierno" user-id="3257817"/> Absolutely on the vigilance and follow ups BT ! Thanks !