No Regrets After Treatment

By Dennis E. Golden

2 min read

Because of my involvement in support groups, I am often speaking with men who have gone through some form of prostate cancer treatment. It's not unusual to find men some 2 to 5 years later telling me they wished they had known more before deciding on treatment options for their cancer.

Time and time again I find people with what appears to be a certain level of “disconnect” when it comes to understanding pre-treatment expectations and the actual outcomes of prostate cancer treatment. The realization and true impact appears to hit home several years later.

Disconnects I see

The more I become involved with post-op patients the more I believe neither men, nor their doctors, possess a true understanding of the quality-of-life issues men may face for the duration of their lives. While it is true there is no way to know or predict how things are going turn out, I suspect if men took the time in advance of a diagnosis to gain a better understanding of possible outcomes, they might be better equipped to decide when and if that time comes at a future date.

Where I see the most disconnects with men and prostate cancer treatment seems with those men who quickly decided on some form of immediate curative treatment for a low-risk cancer. Typically, these men tend to score low on the Gleason scale as in a Gleason 6. Once the Gleason score is G7 or higher, I've found most men appear more satisfied with whatever treatment they finally decided on.

Another disconnect is a total misunderstanding of two phrases: active surveillance and watchful waiting. While I often hear the terms used interchangeably, in reality they are quite different. Active surveillance is delaying immediate treatment and opting instead for close and frequent observation of any developing changes. Watchful waiting on the other hand is typically reserved for men who may be facing a low-risk prostate cancer or may have a shorter life expectancy due to age or other comorbidity complications.

Have a conversation with your doctor

If nothing else, I think men should have a conversation about prostate cancer with their MD, particularly if someone in the direct family line has had prostate cancer or if a female member in that same direct family line has experienced breast cancer (the BRCA gene can play a role in that case).

I find men are often unclear or uninformed when choosing between surgery or radiation as a first-step treatment option. I've spoken to countless men who believed that radiation did not have similar side effects to surgery.

Everyone's experience is different

My advice for all men is check out sites like ProstateCancer.net, and attend in-person support groups with men who have gone through treatment. Always remember prostate cancer is a highly individualized disease, so one man's experience with treatment can differ dramatically than your own.

When you hear the words "you have prostate cancer," stay calm. While prostate cancer can change your life, it's also important to realize that with the right care and treatment, you can adapt to the changes and live a long and productive life, too.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ProstateCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Jim Early Moderator & Contributor
Dennis's advice may be some of the most important advice those of us with prostate cancer can offer to those newly diagnosed. I remember my anxiety when I first heard the word "cancer". Once the shock wears off its a natural instinct to get the cancer removed or cured as soon as possible. Few diagnoses strike more fear than "cancer". The staging of newly diagnosed prostate cancer often with radiologic imaging such as MRI visualization of the prostate, guided prostate biopsy and Gleason scoring have giving us the ability to more clearly understand and explain the need for urgency or the wisdom of NOT rushing to treatment with all its possible side effects. The Gleason score itself is somewhat confusing, although a way to simplify our understand is by converting the two number scoring system into a one number system. Using this method we can grade risk on a 1 to 5 scale with the traditional 3 + 3 = 6 being level one (1) or very low risk for spread. Then 3 + 4 = 7 becomes level two (2) with low risk for spread and therefore often carries advice for active surveillance. Next level three (3) or 4 + 3 = 7 doesn't rule out active surveillance but warns us to watch much more carefully for any advances in the size or grade of the cancer and to seriously consider the need for more definitive treatment. Next 4 + 4 = 8 and any combination equaling 9 or more represent levels four (4) and five (5) and The key here, as Dennis points out, is that levels 1 and 2 and even 3 are not reasons to rush to treatment or to over react to the cancer diagnosis. In our support group it is the norm for new attendees in the decisional phase of their cancer to leave the initial group meetings with a sense of relief. More often than not the group helps them realize that they have time and support and that there is usually no need to rush the process!
1. Richard Faust Community Admin
 Hi <inline-mention username="Jim Early" user-id="4566171"/>. I'm familiar with the scoring system you are referring to. It has been around for a while (see this article from 2016: <a href='https://pubmed.ncbi.nlm.nih.gov/26166626/' target='_blank' rel='noopener noreferrer ugc'>https://pubmed.ncbi.nlm.nih.gov/26166626/</a>) and I'm perplexed (and I'm guessing you are as well) as to why it hasn't caught on more. I have seen more research articles recently using the five level scale, so hopefully things are moving in that direction. I think it would certainly lead to less confusion. Best, Richard (ProstateCancer.net Team)
JosephG Member
Excellent article, thank you. I would also highly recommend two books for all men facing PC preferably before treatment is chosen but they are also extremely valuable afterwards. 1) Prostate Cancer, Survivors Speak their Minds, by Burnett & Morris and 2) Saving Your Sex Life by Dr Mulhall. Dr Mulhall is one of my doctors and I find his transparency and candor to be extremely helpful for understanding and dealing with the reality of being a PC survivor. Dr Mulhall can also be found on YouTube.
tleslie0003 Member
I had stage I prostate cancer found at age 58. My Doctor wanted to do surgery but after some research of cure rate and side effects I chose radiation. The Radiation Physician told me that whatever I considered feeling 100% that I would probably never feel that good again due to the side effects but there was no reason I couldn't get back to 90%. I have been cancer free going on 5 years and do not regret the choice I made for treatment. Yes I don't feel like climbing mountains anymore but weighed against the possible side effects of surgery I am still pleased. My stamina is not what it once was but I am alive and still working full time in Education. During my 8 weeks of radiation I never missed one day of work.
Duane Member
Since this is such a serious subject there is no need for me to be anything but direct. The discussion of the 1-5 grading system is interesting but does the discussion overly simplify a Prostate Cancer diagnosis and the needed treatment? I was diagnosed with PC in December 2021. The results of the biopsy indicated that I had PC on both the left and right side of my prostrate and the Gleason Score for 12 samples were 3+3=6 and 3+4=7 for 10 out of the 12 samples. The stage of my PC using AJCC TNM was TIIB, and the Grade Group was 2, the Staging Group was T2c, N0, M0. PSA was 6.69. My two Dr’s (Urologist and Radiation Oncologist) recommended Radiation with Hormone Therapy. The Hormone Therapy was done with Orgovyx (a very expensive pill to reduce Testosterone). Considering my Dr’s recommendation and all the information I read, I immediately decided to start the Hormone Therapy and the Radiation Treatment in February 2022. Based on the 1-5 grading system, I believe I would have a grade of 2. From the discussion above a grade of 2 would be “low risk for spread and therefore often carries advice for active surveillance”. I am now confused. Did I not ask enough questions? I was never made to feel that my PC was low risk. Active Surveillance was not an option offered and nothing I read suggested active surveillance. The treatment I went with was consistant with all that I read about for my PC. I will always wonder if I went too fast in my decision. I do not believe my Dr's would have agreed with the 1-5 rating. I have an appointment in March and will asked about this 1-5 rating system. Comments are appreciated. 
1. Richard Faust Community Admin
 Hi <inline-mention username="Duane" user-id="4519384"/>. If you get a chance to ask your doctors about the five point grading system, I for one would be very interested in hearing their thoughts. Your confusion is certainly understandable and you may be correct that what I laid out in discussing the 5 point grading system is an over simplification in that it shouldn't mean that there are not other factors and individual case specifics that play a role in active surveillance and other aspects of treatment decisions. The 5 point system is definitely meant to be a simplification. Currently a 3+4=7 and 4+3=7 look to be the same if a person is told they have a Gleason 7, but they are not. An explanation of the importance of the first number over the second becomes necessary. That said, there are all kinds of other factors (for everyone out there see here for a more complete explanation of staging: <a href='https://prostatecancer.net/diagnosis/stages' target='_blank'>https://prostatecancer.net/diagnosis/stages</a>). A 2 on the 5 point scale or a 3+4-7 may be eligible for active surveillance, but that is more common with a 6 on the current Gleason scale (see: https://www.hopkinsmedicine.org/health/conditions-and-diseases/prostate-cancer/active-surveillance-for-prostate-cancer#:~:text=According%20to%20the%20American%20Society,a%20Gleason%20score%20of%207.) In your case factors such as the cancer being in both sides of the prostate and the number of cores jumps out as additional factors. Age can also be a major factor. Also, if you had a Decipher test it may have indicated that you were not a good candidate for active surveillance (see a discussion of this test here: <a href='https://prostatecancer.net/forums/decipher-prostate-test' target='_blank'>https://prostatecancer.net/forums/decipher-prostate-test</a>). It is important to remember that many men who go on active surveillance do eventually need treatment. Hope this information is helpful and, again, hope your doctors can provide more information. Best, Richard (ProstateCancer.net Team)
Jim Mahoney Member
I was diagnosed with prostate cancer in the fall of 2021 at the age of 66 with a Gleason score of 8. My Urologist recommended surgery but he also recommend that I have a consultation with Radiation. After speaking with a friend of my who had a Prostatectomy about 10 years ago and doing some cursory internet research at reputable websites, I decided on surgery. I figured I would be a good candidate for it given my relatively young age. I had the surgery last February and I just had my third post-surgery follow-up visit yesterday. My PSA is still in the undetectable range and my quality of life (other than sexual) has returned to pre-operative levels. In my case, having a Gleason of 8 made the decision easier. I don’t know how I would have reacted if I had been in the grey area. 
1. Dennis E. Golden Moderator & Contributor
 <inline-mention username="Jim Mahoney" user-id="4538910"/> While active surveillance initially can offer immediate emotional relief, regarding the need for treatment it is often just a matter of time before a decision has to be made on treatment options or not treating. Agree a higher Gleason score does make the decision process a bit easier. Mine was a Gleason 9 and I only had 2 positive samples of the 12 taken (4-5) - A follow up decipher score was low - go figure that one --- I did surgery in 2013 and then needed follow up radiation 5 years later - so far all appears to be ok. Fingers are crossed. Dennis (ProstateCancer.net TEAM)
Gary Member
Hi Jim Early I was diagnosed in October 2019 at age 63. My Gleason score was an 8. After dealing with BPH for some 6 years, taking medication and having my prostrate shrunk to treat the BPH, I opted to have a prostectomy hoping to kill two birds with one stone after talking to my Urologist and a Radiologist. The cancer was on the leading edge of the prostrate on the bladder side. My first checkup after surgery, I was informed I had a positive margin. The surgeon didn’t get all of the material out. Nine months later my PSA tripled and I needed to start Testosterone deprivation and radiation. I was never told of the possibility of a “positive” margin. While talking with my Urologist, and other doctors, they use the term “Quality of Life “ which is a very generic term. I would have appreciated being told of the possibility of a margin especially with the location of the cancer. The numbers are an important part of the decision making you need for treatment, however I would have appreciated having more info from doctors concerning the other side effects I’m having now, without going into details. 
1. Jim Early Moderator & Contributor
 <inline-mention username="Gary" user-id="4225670"/> I totally understand and agree. Numbers are just numbers and they only help inform us of the odds of recurrence. Location of the cancer and the complete pathology specimen evaluation are very important; and a full surgical description is critical for our treatment decisions!
2. Dennis E. Golden Moderator & Contributor
 <inline-mention username="Gary" user-id="4225670"/> Failing to Inform patients about quality of life issues is not uncommon. I suspect that our MD's are so focused on treating the disease they tend to overlook the human side of the equation in their quest to kill off the disease. I was recently with group of scientists who were quite excited over a potential cancer treatment option until I asked what anticipated impacts might this protocol have on a patient's quality of life --- personally and for his caregivers. Happily the focus changed. Your best bet as a patient is to ask questions about what you can expect from any treatment and also ask what if any interactions a treatment may have with other things you are taking. It is so easy to find yourself being "over served" at the drug bar especially if you do not have someone on your care team looking out for your total wellbeing. Dennis(ProstateCancer.net TEAM)
scottshelton Member
I was in bad shape. My Gleason was ten. My prostate had bums all over it. My doctor pinched sample's off every one. Painful. But no surgery. Eight weeks of daily radiation and now lupron every six months. I wonder if doctors do surgery just for the money? Eight weeks of radiation was long, but I still have my prostate. That was five years ago. Take care of yourselves.
1. Dennis E. Golden Moderator & Contributor
 <inline-mention username="scottshelton" user-id="3269974"/> I was diagnosed with a Gleason 9 and must admit it was one of the few times I was happy not to be a 10. In my book a 6 or lower would have been just fine! Making a choice between surgery or radiation is stressful. In my situation the prostate cancer (PCa) was contained. Only 2 samples of the 12 were positive at (4+5) . While there are always the exceptions to every rule. I tend to think that today's MD's are a bit more focused on what is best for the patient vs a total focus on the bottom line. No matter how you look at it cancer treatment is expensive. I had a recent run in with non-Hodgkins Lymphoma and found myself looking at $70,000+ treatment sessions every 3 weeks for several months. Thank goodness for my medical coverage and Medicare. At the time of PCa diagnosis my urologist did not try to influence me in any direction. He actually suggested that I meet and speak with a radiation oncologist prior to making a decision. He also suggested that I seek out a 2nd or third opinion. Some 5 years later my post op PSA began to rise and fortunately I had the additional option to treat it with radiation along with a 6 month dose of Lupron. So far ... all appears to be good with a 0.02 reading. While Tony Bennett in 1955 sang "I left my heart in San Francisco" . My updated revision to his song is "I left my prostate at Hartford Hospital" Trust me you never want to hear me sing LOL. Currently enjoying life and it sounds like you are as well. Stay well ..... Dennis (ProstateCancer.net TEAM)
Tigershark54 Member
Hi!, I'm always grateful for the articles here. I was diagnosed in the fall of 2021 with pc. My Gleason score was off the charts. I had a Gleason of 23 4+4. I had no idea what that even meant at the time. I had no idea that there was a blood test for PSA to test for something like this. I like my physician but I don't think he really conveyed to me what I needed as an adult male to do for my prostate health. I had an enlarged prostate for years and I was under the impression that the digital exam was good until such time as my doctor thought I needed something more. Never even thought I was heading for trouble. Well, my choice was very clear when given the options. I had my prostate removed last February. Everything was fine until my last blood test. Now I will be talking to an oncologist about further options. Looks like radiation and then if necessary testosterone-blocking drugs. I'm 66 and still working. I wish the information was better conveyed to men about the importance of regular and thorough checkups. I believe this is something that isn't talked enough about with men because well we're men. And that of course is a load of crap. This needs more discussion so that we can make better decisions earlier and not in panic mode when our heads are swimming.. 
1. Richard Faust Community Admin
 Hi <inline-mention username="Tigershark54" user-id="4732087"/>. You certainly won't get any argument here. We see too many stories of men having heard almost nothing about the PSA. In addition, too often men don't get complete information about treatments, side effects and potential treatments for those. Hopefully, sites like this can not only help with information, but change the mindset and conversation about prostate health overall. Best, Richard (ProstateCancer.net Team)
2. Dennis E. Golden Moderator & Contributor
 <inline-mention username="Tigershark54" user-id="4732087"/> I needed radiation and Lurpon therapy some 5 years after surgery. I decided to do a video journal on my daily visits. I invite you to go to <a href='http://www.TheProstateCancerCoach.com' target='_blank' rel='noopener noreferrer ugc'>www.TheProstateCancerCoach.com</a> where you can get more information on what is like to undergo the treatment protocol. I will say in my case I tolerated it well. Good luck Dennis(ProstateCancer.net TEAM)
Tigershark54 Member
Dennis, I will be sure to look at your video journal. Looks like first, they want to do a scan to see where the hot spot is then Lurpon, then radiation. And I am trying to decide about retirement but don't want to until I get the treatment. My insurance is very good and I have no idea how much it would be to cover the cost without the insurance. I am a vet so I have VA benefits as well as Medicare but I know those don't cover nearly everything. Anyway, I find this site very helpful and will continue to take part. Thanks again Dennis.
Mike Wilson Contributor
Dennis, I am well aware that I am an outlier in multiple ways. I was a Gleason 4+5=9 and felt pressured to make a decision for surgery before my cancer spread. I think we all want to trust the doctor we have chosen to treat us. I read a book my urologist gave me and did a quick search on the Internet. I found nothing that seemed to contradict what my doctor told me and I wanted the cancer gone, so I did what the he recommended. It was easily the worst decision of my life. Nothing I had experienced in my then 63 years of life could have prepared me for the aftermath of that surgery. I would like to add that every doctor is an individual and not all of them are good. Make certain you are comfortable with your doctor as well as the treatment you choose.
Johnny R Member
I would suggest taking your time in your decision on the type of processor you are going to have, along with a second opinion or even a THIRD OPTION. The first thing I did when I found out I had prostate cancer I went to two different people who had it. One had removal the other radiation. I learned about MAM TO MAN from one of them and started going. I was very blessed in the way it went for me. I took my time even though I was a Gleason 8 . I had seen seven different Doctors. I went to the Cancer Treatment Centers of America for four days. The best help I recieved was from a group called MAN TO MAN. This group showed me all the different type of processor and it was from men who have had prostate cancer. The group had 30 to 35 members all which have had gone through prostate cancer. All willing to share their story's to help us new members who have not had any procedure done yet. I learned about HIFU HIGH INTENSE FOCUSED ULTRASOUND . I am four Years cancer free with a PSA .087 . I have NO side effects. The only post op that I do is PSA yearly and a yearly check up from my Urologist. I still go to MAN TO MAN every month to help others by sharing my story. There are now three of us who have HIFU WITH NO SIDE EFFECTS. So do your homework , before you make your decision. You decision comes with consequences that will be with you the rest of your life.

Community Poll

Do you feel like your treatment was delayed?