Newly diagnosed with prostate cancer and still gathering information

Posted by brucemobile @brucemobile, Apr 3 9:59am

I was just diagnosed within the last two weeks. My PSA is 4.1 which I’m thinking isn’t that bad. I was not prepared for the results of the biopsy. Gleason 4+3 intermediate unfavorable. 13 of 15 cores positive. The urologist is favoring surgery. Second opinion also surgery but wants a Pet scan which is in the process of being scheduled. I am in Alabama and expect to be treated here. I am still in the asking questions and doing research stage, at this point I don’t know until after the pet scan if I have any options. The information on the post operative effects ofsurgery goes from mild to wild, I’m concerned. Anyone who can share their experiences would be appreciated.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

(With somewhat similar numbers - PSA of 7.976, Gleason of 7(4+3), localized, 65y/o - I chose proton beam radiation that I had during April-May 2021) + 6 months of Eligard + SpaceOAR Vue.)
Urologists usually favor surgery (because they’re almost always surgeons); get referrals to a radiation oncologist and a medical oncologist.
Always get a PSMA PET scan. Also, ask them for a biomarker (genomic) test and a genetic (germline) test. Those results will all factor into your treatment decision.
You’ll always have options no matter what the outcome of all those tests. The doctors will provide you advice and recommendations, but the ultimate decision will be yours.
One of the understandings I had with my doctors was that quality-of-life and successful treatment were equal priority for me. That set the basis for us working together and agreeing on a treatment plan. In every decision, that “equal priority” was front and center.
The proton radiation treatments were relatively uneventful. Now 4 years later, PSA is remaining low (between 0.35-0.55). It’s as if nothing ever happened - just walked in a revolving door, got treated (28x), and walked out the door…..it’s practically back to the way it was before the prostate cancer journey started. (My wife later told me that if she hadn’t known I was undergoing radiation treatments, she wouldn’t have realized it from any change in me.)

Good luck with your decision.

REPLY
Profile picture for vircet @vircet

@brucemobile & @jayhall I have been in this support group for more than a month. My impression, based on the many postings I have read, is that for those diagnosed early (in the 50's or 60's), surgery is a good option. For those in their 70's and over, radiation may be better. I was 68 when diagnosed. My first option was robotic assisted radical prostatectomy, but after considering my family's concerns about surgery at my age, I reconsidered and I am now scheduled for SBRT April 9 - 21 for five treatments. I hope it goes well for me, and for the gentlemen (younger or older) who choose surgery.

Jump to this post

Hi Vircet. Thanks for sharing your process. I think it’s a great example of how we make decisions that are right for us - and we’re all different. I wish you the very best in April and look forward to hearing updates of your successes!

REPLY
Profile picture for jayhall @jayhall

I was diagnosed in mid Feb. I have two small lesions in my prostate and my Gleason Score was 8 my last PSA was 11-12 and my cancer is high risk and aggressive. I completed an MRI and a PSMA. The PSMA determined that my cancer has not spread and contained in the Prostate. I'm scheduled for a RP at the end of the Month. Depending on the outcome of my RP I *might* have to have some radiation and Chemo. Your PSMA/Pet Scan will determine the treatment. You will have options after that. Welcome to the forum, all of us here are fighting the good fight against this and you are in amazing company here. I have learned so much on this forum, you will too. You are not alone in this. I wish I could give you a hug right now cause the worst part is being newly diagnosed. Please continue to educate yourself. We are here for you.

Jump to this post

@brucemobile & @jayhall I have been in this support group for more than a month. My impression, based on the many postings I have read, is that for those diagnosed early (in the 50's or 60's), surgery is a good option. For those in their 70's and over, radiation may be better. I was 68 when diagnosed. My first option was robotic assisted radical prostatectomy, but after considering my family's concerns about surgery at my age, I reconsidered and I am now scheduled for SBRT April 9 - 21 for five treatments. I hope it goes well for me, and for the gentlemen (younger or older) who choose surgery.

REPLY

@brucemobile
I had RARP 7 weeks ago and I am doing okay. no ED and no incontinence. It is a tough decision to make but it helps to read and ask questions.
https://pubmed.ncbi.nlm.nih.gov has a lot of published medical papers that helped me educate myself quite a bit in making my decision to go with surgery.

REPLY

Not from experience, but you should see a couple of radiation oncologists. As you mentioned the surgeon that perform surgery do so because they think it is the best treatment. I think the radiation oncologist(s) will recommend radiation. You might watch this video on the five fraction treatment.
https://www.youtube.com/watch?v=ZpK3JhVUNDk His other videos are informative as well. You might want to watch the PSMA/PET video.
Is anyone talking about ADT.

REPLY

If you are still in the 'deciding' what to do stage I strongly urge you to look very closely at removal
of the prostate. I had cyber knife radiation 12-13 years ago and the long term side effects are still showing up and they are not pleasant.

REPLY

I had exactly the same diagnosis. Gleason 4+3 unfavorable. I chose surgery at age 64 ( your age is VERY important in deciding on treatment) just in case the cancer came back.
Five years later it did and I just completed salvage radiation and ADT.

REPLY

I am new here, my husband have only one plug 4+3 and only 3 more plugs of 14 total with 3+3, HOWEVER that 4+3 is what is going to result in him having surgery. It is not only 4+3, it had intra-ductal involvement and cribriform cells present. His Decipher test also came back showing high risk for spread and in this particular case RP shows better result than RT.
So sorry that you have to deal with PC diagnosis, it is terribly emotionally tasking event : (, but many, many members here have good results with all kind of treatments and that is very comforting to know. Honestly, if I did not find this forum and did not have so much understanding and support from many members here , I would never be able to gain so much knowledge in such short period of time.

REPLY

Hi Bruce - this part of your journey will, hopefully, be the worst. You can check out my profile for some data points but what I’d like to say to you is that this doesn’t have to be as bad as you fear. I was lucky to catch the PCa early at 66 yrs old and decided to have surgery to “get it outta here.” No regrets.

In your research you’ll find the long-term prognosis is nearly identical for surgery vs radiation, I believe. Your decision may well be dictated by what is found with these subsequent tests. I also found intellectual comfort from reading Dr. Patrick Walsh’s, “Surviving Prostate Cancer,” and “Life After Prostatectomy” by Vanita Gaglani about regaining continence in 10 weeks post-surgery. In my case, everything worked just fine and I’m glad I didn’t stress over the unknown any more than I did.

I like to remember the idea that we can’t choose the things that come our way in life, but we sure get to choose how we respond to them. I’ve found a perspective of optimism has served me well and is sure more fun than being the “black cloud” I would otherwise be.

I wish you the best in your journey and look forward to reading your posts subsequent to treatment where you share your good news!

REPLY
Profile picture for brucemobile @brucemobile

Retired guy, I love the analogy, drinking from a firehouse, perfect! lol I remember listening through the door during my last visit when the PA was talking to the doctor before I met him. Her comment was, he asks a lot of questions, funny! But I have been reading everything I can. When I finally met the doctor I told him I had been reading about him, he asked how much and I answered everything I could find on the internet. Even watched a video of him pealing a shrimp with a da Vinci robot so yeah, knowledge is power.

Jump to this post

Glad you liked it. Looking at my post, one thing I should correct is I was diagnosed on 3/30/2024 at age 70. I did end up having the surgery and I'm glad I did as after the surgery the pathology came back with cribriform and IDC (both bad). I am continent and although I do have some ED I am now able to have intercourse with my wife (although not yet at the level before surgery). One thing that helped me decide was I asked my surgeon what the odds of incontinence and ED were for me specifically with him during the surgery. The odds he gave me were better than I expected. Of course, I have no idea what would be the best treatment for you. Keeping educating yourself and asking your questions. Best Wishes.

REPLY
Please sign in or register to post a reply.