New club member...i think. From Diagnosis to SBRT.

Hello all,

I've been heading down this path for about a year now and after visiting this site as a guest many times, I finally decided this is the best place for good information and guidance.

The short story is that over the past seven years my PSA levels have increased from less than 2 to a 4.9 in late March 2019. about six months ago when I was hovering around 4.0, my primary physician ordered a PSA free with the regular test. That came back at 14%, but my overall PSA dropped to 3.7. Three months later my PSA is 4.9 and my free PSA is 12%. Referral to Urolologist followed. During this progressive rise in PSA, I have never had any symptoms. I'm 64 yo now, 72" tall and weigh 170 lbs. I never get up during the night to urinate. Any DRE I've ever had has been negative. I exercise 5-7 days per week. I eat a gluten free diet by choice. I eat lots of greens and seldom eat any red meat. I do however have a weakness for chocolate.

Before I go further I need to provide a little history. In August of 1999, at age 44, I had my employer-mandated annual physical and my PSA came back in the mid-teens. I don't have any specific numbers in my current medical history files but my big picture memory is intact. I was told to take these results to my primary physician, who saw me the next day. We repeated the PSA right away, with a PSA free component, and I only recall the primary telling me that the regular PSA dropped in half. From there I had some sort of ultrasound exam that came back inconclusive. Referral to urologist resulted in biopsy #1, which came back inconclusive. We repeated the biopsy (#2) and it came back clean. My PSA was now less than 1.0. For the next five years I had a PSA test every four months. All were less than 1.0. All DRE's were negative. After five years, at my last visit with the urologist, he told me that during my second biopsy (done using fluoroscopy) there was a tiny dot on the screen that he was able to excise and he could only speculate might have been a source of my problem. Anecdotally, I was riding mountain bikes for cardio exercise when this all started and remember being numb after long rides. I stopped this immediately with the elevated PSA scare. I can only take a wild guess that I may have had some prostatitis that resolved itself when I stopped riding.

Fast forward to this past Thursday, 4/25/19. The referral to a local urologist here is Asheville, NC resulted in an MRI. The technique is listed as "unenhanced and enhanced high resolution multiplanar, multi sequence MRI of pelvis. The machine was a GE with a 3T magnet. (I was able to remember to ask about this from readings on this site.)

Short version of Findings: Prostate volume 34 ml. Diffuse prostatitis on peripheral zone. Lesion 1: volume 0.42ml within the left peripheral zone at the mid gland and apex. PIRADS 4.

They went on to state that: "(targeting biopsy particularly to the superior most two slices of the ROI in Dynaclad is advised.)

Central gland (transition and central zones): No index lesions identified.
Prostatic Capsule: No significant abnormality.
Urinary Bladder/distal ureters: Trabeculated.

All other notations were either none or no significant abnormality.

So while I was hoping for active surveillance at worst, the PIRADS score tells me they will probably want to go to a MRI fusion biopsy. I looked up the credentials of the Radiologist online. Nothing real specific noted except for a "specialty" in abdominal imaging. I'm in western NC, and I've not found a specialist or facility with a PC focus yet. I believe there is a MRI specialist in Chattanooga, TN that I could consider for a second opinion on the MRI imaging.

Well, that's all I got for now. Any thoughts are greatly appreciated.

Post Edited (e.noont) : 8/29/2019 1:23:05 PM (GMT-6)

E.noont, welcome to the forum. We’re glad you’ve gotten a lot out of your readings here, and hope you’ll stick around and keep us posted.
As you likely know, a pirates 4 gives you a pretty high chance of a positive cancer diagnosis. Here’s a study (abstract) you might find worthwhile. Of course it’s not a Guarantee of a positive diagnosis, that can only come from biopsy.

I have no specific words of wisdom other than to point out what you already know...it’s so important to work with a competent practitioner, through this process. So unless you have ircumstances that prevent it, you should consider traveling if you don’t have complete confidence in whom you are working with. Maybe take GG’s lead above.
I’m sure you know that even if it’s a positive diagnosis, PC isn’t like many other cancers, it’s manageable as a chronic disease for many years, even decades, for the vast majority of us.

Good luck.

Thanks to all of you that have responded. Waiting for my Thursday afternoon appointment with the Urologist. I'm guessing that I'll get an appointment for a biopsy and wait for that. Then wait for results. After that I guess I'll have some idea on what needs to be done. In the meantime, I stained most of the back deck today.

Gemson, do you have the name of a particular doctor or contact person at Duke? I'm guessing things will be easier with my insurance if I stay in-state.

I plan on posting regularly as my situation develops and I'll build a signature to include any biopsy results.

Well I finally got my biopsy results. No surprises. Adenocarcinoma. Gleason 7, 3+4, favorable intermediate risk, grade group 2.

The Uro phoned me two days after the biopsy and let me know the outcome, but my path report results weren't available online until yesterday. Because I had an mpMri a few weeks earlier they fused those results with the ultrasound machine and I believe they used a program called Uronav. The Uro pulled a total of 15 cores.

Sample A was four of the cores from the area of the lesion found on the MRI and they are labeled as "ROI", or region of interest.
These were graded as 3+4 in three of the four cores and 70% of the tissue, with PNI present. Pattern 4 accounts for 10%.

Sample B,C, and D was two cores each from the right base, mid, and apex. Benign tissue, negative for malignancy.

Sample E was two cores from the left base. One of the two cores was a Gleason 3+4 in 13% of tissue. Pattern 4 accounts for 5%.

Sample F was two cores from left mid gland. In both cores, Gleason 3+4 in 87% of tissue. Pattern 4 accounts for 30%. ( I can only guess that this is because it is the area of lesion found on MRI).

Sample G was one core from the left apex part of the gland. (I'm not sure why they only pulled one core from this area). Gleason 3+4 in 24% of tissue. Pattern 4 accounts for 20%.

I'll meet with the Uro next week for treatment options. He indicates that I have some time to make treatment decisions but the PNI concerns me. I'll see if I can get the biopsy slides sent to Dr. Epstein for a second opinion before meeting with the Uro. I've decided that I'll use Duke Cancer Center to also consult with about treatment options. They have a program that will allow you to make one appointment and meet physicians from all the specialties back to back.

I'll try and condense all the tech info above into my signature.

e. There have been good reports on Duke on this forum before. I like their consultation plan....where you make one appointment and spend all day talking to the different practitioners from the different disciplines. With a G7 you may still qualify for AS--at least it's worth asking about. Make sure you talk to the radiation team as well as the surgical team. Then, make your decision and relax.

Sounds like a great first consult--it's scary to navigate this and the fact that your doc was so open has to be helpful. Let us know how the consult with the RO goes--keep in mind that there are several types of radiation--external beam and brachytherapy. And even within those two broad classifications, there are several types (IMRT or SBRT and HDR brachy or LDR brachy).

Well, it sure seems that you have been doing your homework and that you have been getting some great advice here.

Let me just add my own $.02 here. I will not try to convince you to choose any particular type of treatment (yet?), but I do want to caution you that when you are meeting with radiation oncologists, as Michael mentioned, there are quite a number of radiation modalities which could be appropriate to your pathology. ALSO, do be aware that RO's are sort of unique. Each of them is really only capable of fully describing the specific types of radiation therapy that they can offer you. For example, if you were considering brachytherapy (radioactive seeds implanted into your prostate, etc.), and you were meeting with a specialist in external beam radiotherapy, then that doc wouldn't know the newest in brachytherapy and would very likely try to convince you that his beam therapy is the way to go. If you ask questions about beam therapy of a brachytherapy doc, he would probably steer you back to how he can help you. The only way to ensure that you get the full picture about any radiation therapy is to talk with docs who offer it. Sometimes you get lucky. My own RO is expert in IGRT, Tomotherapy and SBRT, so when I wanted to talk about SBRT, she was all ready with her statistics, discussion of the treatment process, and all the rest.

Yes, I am also a G3+4. favorable intermediate risk patient and I did choose SBRT. So, if you have curiosity about that treatment process, just ask me (I'm a happy camper, too.).

e.noont,

Sorry I haven't responded sooner but if you still want to talk to someone at Duke cancer center I liked Dr Cary Robertson. https://www.dukehealth.org/find-doctors-physicians/cary-n-robertson-md I felt He was very thorough and personal even if he is a bit dry or clinical. The facilities at Duke at very nice and they have the ability to use the treatment plan you decide is best for you. It sounds like you are Looking at RT which is not Dr. Robertson's specialty but it might still be worth talking to the people at Duke.

Best of Luck,

e.noont - You are doing quite well with all of this and have given it a lot of thought. You should have no problems eventually making a decision when the time comes. This forum is a lot of help but ultimately the decision will be yours, and once you make it, you will feel a lot better and want to know why you can’t do it next week. The side effect dice may be nice to your or not but there is little you can about that other than the research you are doing and getting good providers. “I love it when a plan comes together” says Hannibal Smith

Confirmed an appointment with Duke Cancer Center for my "multi-disciplinary consultation" in a few weeks. Hopefully the Oncotype and JH biopsy results are in before then. Between now and then...more research!

Mumbo, you are right. I should probably take a little time off and let this sink in. I would like to thank all of you that have responded to my posts and provided me some very insightful advice. I do have a treatment plan in mind for my risk level and I find myself looking for anything that questions the efficacy of that plan. As a result, I find the same information coming up over and over during my searches. I may be guilty of "the paralysis of analysis." I'm just trying to make sure the decision on what form of primary treatment I choose gives me the best chance of a cure.

Gemson and halter, thanks for your follow-up. I finally got my appointment with Duke and feel as though that may be the last big piece of the information puzzle. I'm hoping that any remaining questions those interviews answer or create will be easily resolved. They seem to be a leading source of treatment and information in my area. I'm sure the trip will be worth it.

Union98, I keep Dr. Busch's info in a folder that I take to all appointments. I have read extremely good comments about his caring practice. Similar to your experience, I feel like I (unexpectedly) learned the most about this process from my time with the RO and that surprised me.

Again, thanks to all. I'll continue to post anything relevant and hope this helps someone else down the road.

Tudpock18 said...
e, let me give you a belated welcome. I've been following your thread but, while Mumbo's warning is well stated, I don't think you are at a "paralysis by analysis" stage. That happens when you keep studying stuff and never move forward. I don't see that with you. I think you are taking a careful and studied approach to our disease and will likely make an educated decision when you are ready.

After 10+ years on this site, I don't see very many men who felt they learned too much before making a decision. Rather there are many guys who regret not taking the time to get educated before making such a potentially life changing decision. In my opinion, you are on the right path.
I was one of those that jumped in uninformed. Cant add much except, Google " Optimizing sexual function in prostate cancer patients by Dr Mulhall"

Jim

Well, it’s been almost five weeks since I last posted. Since then, I had my second opinion consultation with a RO, MO, and URO at the Duke Cancer Center. My time with the medical oncologist was the briefest as we mainly talked about treatment options I might consider based on my Oncotype test or an upwardly revised second opinion from Johns Hopkins on my biopsy. Surprisingly to me, ADT can be considered as part of a combination therapy treatment plan for a Gleason 7, 3+4. Since then, I’ve downloaded the NCCN Guidelines Version 2.2019 and printed out all material related to risk stratification, recommended treatment guidelines for 3+4 and 4+3 disease, and the specifics on radiation therapy. I would note that there is a section for 3+4 favorable disease patients that, upon assessment have aggressive tumor behavior, that can be considered for ADT and/or lymph node radiation. This MO stated that most likely the treatment would be six months of Lupron. The NCCN guideline is four months.

The meeting with the URO surprised me. After a very, very, very thorough DRE exam, it was “felt” that my clinical stage was a T2B and not T2A. While sitting there my Partin Table numbers were run and I was told that there was a greater than 50% chance that my disease was not localized. It was recommended that I get robotic prostatectomy surgery soon to include a “wide margin” excision on the left side as well as a sampling of lymph nodes. All my disease is on the left side only and he felt that I should not consider nerve-sparing for that side. I mentioned that my 3T MRI didn’t identify any disease or abnormality beyond the prostate, but he told me that the MRI imaging at Duke was superior and my local imaging provider probably didn’t see it. They did review my biopsy slides from the local pathologist and the only difference they identified was a reduction in the pattern 4 disease, from 10% to 5%, in the cores involving my lesion (aka region of interest).

My time with the RO was probably the most informative. Another DRE exam and once again, like magic, I’m a T2A. We talked about LDR, IMRT, and SBRT treatment options. With all the studies on SBRT so far, I was surprised to hear that form of treatment described as “experimental.” I know that in the fall of 2018, a review of IMRT and SBRT efficacy was released at the annual ASTR0 conference. The numbers are pretty impressive for SBRT, even considering the 3/2017 cut-off date for evidence review. As of today, IMRT in 20-26 treatments is strongly endorsed by ASTRO for low, intermediate, and high risk prostate cancer patients. It appears that SBRT doesn’t have a long enough history yet in order to remove the “experimental” tag or get a strong endorsement. (The preceding information was obtained from Allen Edel and his Prostate Cancer News, Review, and Views web site.) As it turned out, this RO is the “study doctor” for a Phase 3 clinical trial on SBRT (5 treatments) and IMRT (28 treatments) as it pertains to localized intermediate grade prostate cancer (NRG-GU005 is the trial ID number.) I was given an application to review and decide if I wanted to participate. The conflict for me is that once I decide on a final treatment plan, I could get randomly assigned to the other group. Since my first shot is my best shot at a cure, I’m not inclined to participate in a treatment plan I don’t wholeheartedly believe in. Since that consultation, the RO and I have been in contact via phone and email. I’m hoping to get the RO and MO opinions on mono/combo therapy for my treatment.

Well that brings us to the final two reports in my treatment decision puzzle. The Oncotype report was not my friend. I pursued this testing because I have little to no family history available. My GPS score is 37. My understanding is that scores <20 would be low risk. My risk for adverse pathology is 56%. They define adverse pathology as Gleason 4+3 or greater, or pT3+. In their opinion, my results are indicative of an “intermediate” risk patient and not the favorable intermediate classification of my biopsy.

The second opinion service from Johns Hopkins was better than expected. Actually, this is the third review of my biopsy since Duke also did one. I was fortunate enough to actually get my review from Dr. Epstein. As both previous reviews indicated, all right side cores are benign prostate tissue. In my “region of interest” or lesion, they also agree with the other two reviewers that three of four cores are graded as 3+4. The local reviewer and JH both see 10% pattern 4. Duke pathology saw 5%. JH saw all remaining positive cores on the left side as a 3+3. This represents a downgrade from my local path reviewer and Duke. So I ended with 3 cores at 3+4 (10% pattern 4) and 4 cores at 3+3 out of a total of 15 cores. Once again, this math puts me in the favorable intermediate risk category.

So what do I do with the conflicting information? You can probably see that I’m leaning toward radiation as my primary therapy. I’m just trying to decide if there’s enough information in front of me to determine confidently that mono therapy alone is going to cure me. The Oncotype results question that for me. I know that “intermediates” have a harder time making these decisions so that is why I continue to consult with the Duke RO/MO. The NCCN guidelines now place a greater emphasis on gene testing too. I figure I’ll have made my decision by the end of next week. By the way, I lost the business card from the Duke URO before I got out of the building.