Gleason 7 (4+3), ECE, PSA 3 – Considering IMRT + ADT vs. Surgery –
Hi everyone,
I’ve recently been diagnosed with Gleason 4+3=7 prostate cancer, with extracapsular extension (ECE) and a PSA of 3 I'm 63 year of age. My Urologist tends to lean toward the tumor being solely contained whereas the Radiation Oncologist is treating it as truly being ECE. The radiologist that read the MRI stated "Broad-based capsular abutment raising consideration for ECE without capsular irregularity or bulging event". The pathologist also mentioned "FINDINGS SUGGESTIVE OF EXTRAPROSTATIC EXTENSION" but did not make any mention of the biopsy sample containing either membrane material or fatty tissue from outside the prostate gland so I'm sort of confused as to how they could make that statement. The Urologist told me that every effort is make to ensure the biopsy does not extend outside the prostate gland/membrane.
I'm leaning toward assuming that ECE is truly my case. I’ve been weighing treatment options and would really appreciate hearing from others who’ve been through this or have insights.
Current Options I’m Considering:
• IMRT (Intensity-Modulated Radiation Therapy) + Hormonal Therapy (ADT)
• Radical Prostatectomy
• Possibly Proton Therapy as well (Would need to travel to Atlanta daily ~50 miles)
What I’ve learned so far:
• Cure rates for IMRT + ADT seem to be around 88–92% in my risk group.
• Proton therapy offers similar outcomes, with maybe fewer rectal side effects short-term.
• Surgery carries a higher risk of positive margins when tumors abut the capsule (as mine does).
• Hormonal therapy (ADT) adds side effects like fatigue, ED, hot flashes, and mood shifts — most of which seem reversible if therapy is short-term.
• Long-term radiation side effects include 5–10% risk of urinary/bowel issues and ~50% chance of ED.
I’m trying to balance cancer control with long-term quality of life. I’d love to hear:
🔹 What treatment did you choose and why?
🔹 How have you handled long-term side effects (urinary, bowel, sexual)?
🔹 Would you do anything differently?
🔹 Any regrets or surprises along the way?
Thanks so much in advance — it means a lot to hear from those who’ve been through it.
- Tim
Interested in more discussions like this? Go to the Prostate Cancer Support Group.
I forgot to mention that the PSMA PET scan shows no cancer in the Seminal Vesicles or Lymph nodes and contained to the prostate.
Welcome to the Club no one wants to Join. This forum is amazing! 🙂 You are in the right place. I had my RARP in May. I'm 60 and my PSA was 11-12 when diagnosed my Gleason Score was 8 (4+4) and my grade was type 4. My Cancer was determined to be High Risk. My PSMA and MRI both agreed that there was no spread and my post op Path report confirmed this. I have my Post Op PSA blood work next week and I should get a figure of around 0.0? I hope. I chose the RARP because the Surgeon and Urologist both agreed that radiation/chemo could do more damage to my bladder etc and not get all the Cancer. I had 8 PT sessions for pelvic floor training and other than a little leakage I have no Incontience. I'm getting my Erections back slowly, but they are coming back. I don't regret having the RARP and the only thing I wished would have done differently would be to meet with a Therapist that deals with Cancer Patients.
You are welcome here and everyone here has been so supportive and amazing. I appreciate everyone here. I can never thank the people on this forum, enough ever.
I was diagnosed at 62, After surgery, it was a 4+3. I had surgery 15 years ago and 3 1/2 Years later, it came back so I had salvage radiation. 2 1/2 years later came back. I started Lupron and 2 1/2 years later, I failed Lupron, which is called castrate resistant. Started on Zytiga, Which kept my PSA low for 2 1/2 years and then I switched to Nubeqa and I’ve have been undetectable for 20 months
Found out Four years ago that I have BRCA2. That’s why I got it at 62 but my brother got it at 75. We both had the same father that died from it, but he didn’t have BRCA2 Which causes it to occur younger.
I bring this up because I’m wondering if you’ve had hereditary genetic testing yet. Have people in your family had cancer or prostate cancer? Has it been offered to you by a doctor? You can get it done free with the below link, if you live in the United States. Do not check the box that you want your doctor involved or they won’t send you the kit until they get in contact with your doctor. It takes about three weeks to get the results and then a genetic counselor will call you.
`
Prostatecancerpromise.org
Surgery and radiation have about the same result but surgery can cause serious ED. If they can save the nerves that can help a lot. There are a lot of solutions to ED. Some people get implants some people really like the injections. If you have radiation, there’s also a risk of having ED two or three years after treatment.
Most people do not become incontinent, Though it may be difficult for the first few months. I started having some incontinence problems six years after radiation. It’s not too bad if I take a pill, which makes it a lot better.
Definitely consider proton radiation. It is used with children who have cancer that has to be treated with radiation because it has a very low chance of causing cancers of other organs. You might live 30 more years and if you have radiation in 10 or 15 it might be an issue.
For a Gleason 4+3 ADT is recommended for six months. That’s pretty easy to live with, I’ve been on at eight years, Not as easy. If you get Orgovyx for ADT Testosterone usually comes back quicker than with other ADT drugs. You should realize that ADT does not kill the cancer. It just stops it from growing.
I live what most people would consider a normal life. You would have a hard time figuring out I have cancer. To offset the side effects of the drugs, I walk on a track twice a day, 1 mile every day. I also get to the gym usually three days a week. You’ve got to use weights and exercise exercises in order to keep your bones strong.
You should consider getting a second opinion from a center of excellence. You could also find a Genito Urinary Oncologist, They are the ones that specialize in prostate cancer and can guide your treatment with other doctors.
Honestly one of my major concerns is doing the Robotic Assisted RP and either immediately or later on having to do salvage radiation + hormonal therapy. My pathology report did mention that the Cribriform pattern was present which from everything I can find is NOT a good thing. This makes me think that recurrence is probably likely. The Radiation Oncologist didn't seem particularly concerned with the Cribriform pattern being present.
My father had prostate cancer in the 1980-1981 time frame unfortunately I don't know any specifics concerning type or treatment other than he had surgery. He never had any further incidence involving prostate cancer for the remainder of his life (he was ~60 at the time of surgery). The Radiation Oncologist does want to do genetic testing my Surgeon/Urologist didn't mention any plans for the additional testing.
Thanks so much for the good news concerning Orgovyx/relugolix as this is what my Urologist plans for the ADT Treatment, that certainly helps to minimize my strong concerns regarding that leg of the treatment. My Radiation Oncologist told me that IMRT is essentially on-par with Proton treatment; however, it's difficult to evaluate this statement since the available data for Proton treatment is small as compared to RT. I travel to Emory in Atlanta next week to get an additional opinion. I'm truly 50/50 on this but the worst case in my mind would be to have to go through RP, Radiation and ADT all.
@gtiml
Like all of us that came down with prostate cancer what to do can be overwhelming. My caution to you based on my journey with prosate cancer is make sure you do what you do is what is best for you. Everyone's is different both medically and mentally. What one will see as an issue another will not. You know yourself better than your doctors and anyone else.
You did not mentioned getting a second opinion. I assume your urologist and R/O are at same medical facility. I seems you have from your post different opinions on your cancer. If me, and that is why I say again has to be best for you not me, is I would get another opinion. A lot of second opinions can be done with just sending your medical records to another medical facility.
Your questions:
I’m trying to balance cancer control with long-term quality of life. I’d love to hear:
🔹 What treatment did you choose and why? I got three different consultations and opinions. I chose proton radiation over photon. Proton offers a more precise and possibility of less radiation damage and possible secondary cancers because it does not enter body at full dose, nor does it exit the body like photon. I declined photon (SBRT) at Mayo Jacksonville and went to UFHPTI which has been doing proton radition since 2006.
🔹 How have you handled long-term side effects (urinary, bowel, sexual)? Again every one will be different and what one will have another will not. I had some slight fatique, higer urgency to urinated but that was it during treatments (30 rounds of proton radiation). About 2 years after treatments I had increased need to urinate, dribling, dry orgasms. I was told the bladder, prostate pretty well got damage by radiation and this was commone. I learned to change my lifestyle.
🔹 Would you do anything differently? NO. Except I might have considered doing the high dose radiation treatments versus the low dose extended treatments. Both have same succesful outcomes. The short high dose is usually done in 5 sessions. Low dose and extended can be 20/30 or even higher number of treatments. I just though getting it over would be better mentally. But my PCP and R/O stated studies coming back were showing an increase in side affects for the high dose short period.
🔹 Any regrets or surprises along the way? I regret getting prostate cancer. I had an excellent PCP who even though I had normal PSA he did not like my rising PSA numbers. So my prostate cancer was caught early. My biggest surprise was the dry orgasms. I don't remember being told that was a side affect but was quite shocked when it happened. Then I contacted my R/O and PCP who confirm happens quite commonly with the radiation damaging the seminal vessels coming through prostate.
What you did not mention or ask, other tests. From my experience with this and my journey I had the additional test done. Decipher test (more accurate risk level), bone scan (has cancer spread to bones), PSMA (has cancer spread to other areas). The Decipher test can be done with your existing biopsies.
Good luck!
Was your cribriform over .25 mm? That makes it much more aggressive. Surgery is usually the best thing with Cribriform. SBRT (cyberknife) is not sufficient. Brachytherapy may be necessary to completely remove it.
IMRT can get it but again Brachytherapy may be necessary. IMRT cannot get the narrow beam like proton.
If you watch the 2023 PCRI Video and see Dr. Carl Rossi talking about radiation you find some interesting things. For one he’s been doing Proton radiation treatments since 1994 when they built a building for the machine in San Diego. The first patient was the person that invented it, He lived to over 100. He has done Proton radiation on over 13,000 prostate cancer patients.
That video link is
Proton therapy definitely causes less secondary cancers than other radiation therapies. They prefer to use it in children to avoid secondary cancer risk over their lifetime. Proton therapy machines have been extremely expensive to build or treat patients, which is why it is so much more expensive and less used. They have finally been able to get a proton machine built in one and two rooms, which will greatly reduce the expense. Eventually, it seems proton, will probably be equal in priced to other techniques and will be used much more often.
Unfortunately the pathology report mentions "Cribriform and poorly defined glands" which I believe implies it is a smaller diameter.
With your 4+3, you have many options.
> what % are “4” and what % are “3”?
> if ECE is confirmed or suspected, is there even a reason to consider prostatectomy if the cancer (may have) already escaped?
> they can make those different statements because they’re both giving their (educated & experienced) opinions - but, they’re just opinions.
I travelled 40 minutes (to Cincinnati) each day for my 28 proton radiation treatments. I think it was worth it.
> Even with proton, I still used a rectal spacer (SpaceOAR) just in case (to minimize the risk of rectal/bowel issues. But because of your ECE, it’s unlikely they’ll use a standard rectal spacer. Instead, you should ask them about using the BioProtect rectal spacer. It’s a different technology than SpaceOAR/Barrigel, and used if ECE is suspected.
> there are easy ways to minimize most of the side-effects of hormone therapy.
> with radiation, the risk of ED is minimized if they avoid radiating the penile bulb,
My experience:
> With success rates being similar, I chose proton over IMRT due to proton’s Bragg-Peak characteristics; I chose proton over prostatectomy due to (1) no medically-necessary reason for surgery and (2) quality of life issues.
> Have had no urinary, bowel, or sexual issues.
> Would do nothing differently. No regrets or surprises. Today, it’s as if nothing ever happened - just walked in a door, got treated (28x), and walked out the door…..it’s practically back to the way it was before the prostate cancer journey started.
Cribriform pattern in prostate cancer is a key consideration in classifying and understanding the aggressiveness of the disease and is often associated with higher risk of recurrence and poorer prognosis.
I do not think it implies anything - cribriform literary needs to be measured to determine if they are "big". Measuring cribriform for actual size is a novel idea and many pathology labs probably are not doing it. Until relatively recently cribriform were not even included as observation in pathology report and IDC was often bunched and mixed together with true ductal carcinoma which is completely different entity. All in all, "big" cribriform just has more mutations than small ones, and small ones have more than a plain gleason 4 cell. The more mutation there is- the more aggressive cancer is, and sometimes those cells are less susceptible to radiation because they have so many mutations and possibly even better reparation mechanisms of their DNA. There were many studies but nobody knows with absolute certainty why cribriform are "bad news" but they are, so treatment has to be adjusted accordingly, meaning that treatment has to be more aggressive when they are present.
If you really wish to know the size of cribriform you should send your slides to a lab that measures them and getting second opinion on pathology is a good idea anyways. If it is truly the most aggressive big cribriform, it is the most resilient bugger. For that reason recurrence is possibility with either RP or RT but as with anything else in life it does not happen always ! You should just have one thing in mind thou - if you have radiation as initial treatment you can not irradiate that same area twice. If you have RP as initial treatment you have radiation option as an "ace" up your sleeve.