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)
Duke Medical looks about the same distance as Chattanooga
I do believe some of the members of the forum have used Wake Forest or a center in Charlotte - they may have some insight.60 now, 59 DX, PSA = 16. 8/18 DiVinci RALP-left base bulge and 1 nerve removed - Post Op Surgical Path 3+4, tertiary 3, 10% grade 4, margin -, ECE+, 1 SVI+, bladder -, LN - (0/12), pT3b,N0; 1st post op PSA 11/18 <0.006; Decipher 0.7 (high); Adjunctive RT with tomotherapy finished March 2019, 38 sessions; 68.4 GY
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.I am not a doctor, just another guy without a prostate Dx Age 64 Nov 2014, PSA 4.3 BX 3 of 12 cores positive original pathology G6 RALP with Dr Ash Tewari Jan 6, 2015 Post surgical pathology G7 (3+4), - ECE, - Margins, -LN, -SV (+ frozen section apex converted to negative) PSA @ 6 weeks 2/15, .<02, remained <0.02 until January 2017, .02, repeat Feb 2017, still .02. May 2017-.033, August 2017- .033 November .046, March 2018 .060. June 2018 .068, July 2018 - .082, August 2018, .078, August 2018 - .08 Start ADT. Sept 2018 Start SRT Sept 2018 thru November 2018 – T = 4, PSA = <.05 Decipher test, low risk, .37 score My story.... tinyurl.com/qgyu3xq
Welcome to HealingWell. I live outside of Charlotte and after receiving my diagnosis I traveled to Duke for a second opinion. My wife and I were quite nervous after the diagnosis and the people at Duke did a great job of helping us relax and understand things a bit better. The good news for me was that they agreed I am a good candidate for active surveillance so that is my current treatment. Additionally I gained a lot of confidence in their facility and will consider them if I need a more definitive treatment in the future.
Good Luck on your journey!Age at DX 52. (8/17) PSA 4.4 Under AS. 4/17 PSA: 4.1 7/17 Bx 1 of 12 positive (2 Suspicious) G6 2% arises in PIN, markers CK5/14p63 T1c, ICD-10: R97.20 prostate Volume 67cc PSAD 0.07 11/17 ER trip for Urinary Retention, Now taking Dutasteride and Rapaflo 1/18 3T mpMRI with contrast Nothing Specific found. 3/18 PSA 2.01 6/18 PSA 1.40
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.
welcome, perhaps, to our club. Let's hope your stay is brief. What many of us found when dealing with the major centers such as Duke is that if you call their new patient phone line, there are good people there who know how to set things up.
However, that may be a bit premature: let's see what the biopsy says. If you've been reading this forum for a while, you know that the biopsy is the key...and a key thing also is to plan on a second read of your slides. It may be that you'll come in at the low end--and get to just watch it for a while.
In the mean time, try to relax. It's rarely as dire as we project it could be.Age at Diagnosis: 56 RALP on 2/17/15, BJC St. Louis, Dr. Figenshau 58.5g, G3+4, 20%, 4 quadrants involved PSA Non-Detect since April, 2015 My Story: www.healingwell.com/community/default.aspx?f=35&m=3300024
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.
Sorry about your positive diagnosis...even when you have a feeling it's coming, it's unsettling to get that news. I'm glad you're planning on getting the second opinion from Epstein--your diagnosis may not change, but it's always good to get confirmation so you're on a firm footing when you make treatment decisions.
Based on everything I've read on this thread, I think you're well-informed and that will serve you well as you move forward. Good luck to you and I hope this community can help as you go through your journey.Age 58, Diagnosed at 51 PSA 9.6, Gleason: 9 (5+4), three 7s (3+4) Chose triple play of HDR brachy, IMRT and HT (Casodex, Lupron and Zytiga) Completed HT (18 months) in April 2014 3/19: PSA = 0.04
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.Age at Diagnosis: 56 RALP on 2/17/15, BJC St. Louis, Dr. Figenshau 58.5g, G3+4, 20%, 4 quadrants involved PSA Non-Detect since April, 2015 My Story: www.healingwell.com/community/default.aspx?f=35&m=3300024
We met with the Uro last week and he typed me as a T2A. He opened our discussion by asking me to give him any and all questions I had. We had typed out a list in order to keep organized and my wife had her copy of the questions and took notes. Our discussion focused on the surgical treatment process and I have to say that he never seemed to be steering me to "surgery is your best option" and referred to my treatment options as either surgical or RT. He referred to Dr. Epstein as "the man" when I asked for a second opinion on the biopsy. Together, we agreed to go forward with the Oncotype gene testing. He feels that I'm a good candidate for nerve sparing RALP. Our discussion on the possibility of the "trifecta" of results was frank and consistent with my research. Although I did miss a couple of questions, he was very forthcoming about giving me his RALP experience and told me he is always available for questions. I asked for a RO referral and he immediately gave me a name of someone he is comfortable with. I actually felt good coming out of this appointment. I received a phone call from the RO office the next day and have a 1.5 hour consultation appointment in three days. We'll be working on his/her list of questions today. I will probably start feeling out the process and appointment schedule for consultations with Duke next week.64 y.o. at Dx. BMI<25, 3/15/19 PSA 4.9, 4/25/19 3TMRI showing PIRADS 4 lesion, remainder of MRI negative, 5/14/19 MRI fusion biopsy showing Gleason 7 (3+4) Intermediate/favorable, T2A. Consult with URO re: surgery. Consult with RO next. 2nd opinion biopsy at JH and Oncotype in process.
Post Edited (e.noont) : 6/2/2019 5:58:06 AM (GMT-6)
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).Age 58, Diagnosed at 51 PSA 9.6, Gleason: 9 (5+4), three 7s (3+4) Chose triple play of HDR brachy, IMRT and HT (Casodex, Lupron and Zytiga) Completed HT (18 months) in April 2014 3/19: PSA = 0.04
noont, it sounds like you're on a good path with real pros. Let us know what the RO says, and we can share our experiences with the varieties of treatments. The good news is, that "cure" is in your vocabulary--with the G3+4 diagnosis, you have good odds of being once and done with treatment, and a long time of stable life in the future.
Do keep us posted as you do your research.Age at Diagnosis: 56 RALP on 2/17/15, BJC St. Louis, Dr. Figenshau 58.5g, G3+4, 20%, 4 quadrants involved PSA Non-Detect since April, 2015 My Story: www.healingwell.com/community/default.aspx?f=35&m=3300024
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.).Age 68 at Dx PSA history: 2000-2012 0.9-1.2; 06/2012 started T replacement 2013-2015 3.0-3.3 (new normal); 11/2015 4.6; 05/2016 5.7 Biopsy: 12-core biopsy 07/2016; 3 cores G3+3, 5% or less; 1 core 3+4, 15%; 1 core HGPIN; 2% of gland involved. Summary G3+4. CyberKnife SBRT with Dr. Hirsch; start 11/15/16, finish 11/23
Well we went to the RO two days ago and what a thorough process that was. The first half hour was spent with the doctor's nurse while she conducted a baseline evaluation and questionnaire with me. This particular doctor turned out to be the director of the cancer treatment center and would be managing my care and creating the treatment plan, should I choose one of the radiation options. As an intermediate favorable risk patient he feels that a monotherapy treatment plan would best serve my needs. He spent nearly two hours with me going over everything including brachytherapy, IMRT, SBRT, and his perspective (seemed unbiased) of surgery. Surprisingly to me, he also did a DRE exam to confirm my T2A clinical status. Here I learned that that RO’s do their DRE exam differently than URO’s do. He says it’s a matter of training. I used the list of questions provided by Tall Allen and we eventually covered everything. I learned that he uses fiducials in most all his image related treatment plans and would have the Uro place them and a hydrogel pad between my prostate and rectum if I chose SBRT. Apparently they have to do a CAT scan and MRI back to back as part of the initial treatment plan. Although it makes unpleasant sense to me, they will catheterize the patient in order to control the volume of urine in the bladder so that both images have the same urine volume in them during scans. I believe this helps them with overlaying the images and lining them up with the fiducials in order to direct the small beams. I also believe that a certain volume of urine in the bladder helps move it away from the prostate during actual treatment. His coverage of my other options was also this thorough, but not a lot of new information that hasn’t been covered elsewhere on the forum. One thing in particular that he spoke of was in response to my query on peripheral loading for LDR brachytherapy. He says he uses a modified peripheral loading system that links the seeds in higher concentrations through the areas where cancer is usually found, but places seeds individually in a lower concentration around the urethra, where cancer is not as likely to be found but still at a dosage level necessary to treat. Before closing they will scope the bladder for a check and also to document individual patient anatomy in case there are urinary flow issues later. He starts all beam radiation patients on FloMax and Ibuprofen prophylactically. He feels the nsaids help with a urethra irritated from radiation.
The local treatment center here has only had a Cyberknife machine for two years, but their experience so far has been extremely good. Their SBRT plan for monotherapy patients is for five treatments and certainly seems convenient. I forgot to ask about the dosing he would use but he gave me his phone number for more questions. Of course, my primary concern is a cure and I asked him how my treatment plan might change if my biopsy second opinion slide reading upgrades me to an “unfavorable” intermediate risk. He says I/we would have to decide on a combination therapy plan. He hopes I don’t need to go that route because monotherapy is so much easier to manage if there are complications. Even if I were to get a downgrade from JH on my biopsy slides, I would still get treatment. Statistically, the cure rate goes up for a 3 + 3.
I asked him for his top two recommendations as it applies to my case. He said either surgery or SBRT. I asked him about treatments for recurrence. Again, no new information. Of interest is that there’s a physician near Duke (in NC) that is doing LDR for patients that have failed primary radiation treatment. Apparently, he’s very talented. The one positive that surgery has is that once the prostate is out and goes through Pathology, you immediately know exactly what you have. Cure rates between the two treatments are comparable, but some people have the “get it out of there” personality and may choose surgery for that reason. For those type patients, I agree with their decision. It’s really all about what you feel will serve you best and give you the best opportunity for a long, high quality of life. I also asked the doctor what percentage of post surgical path reports result in a Gleason upgrade. He said it is as high as 25% in some locations, which is a higher number than I’ve found so far. I feel the worst for those that choose surgery as their one and done, only to have to go to radiation right away based on post surgical findings.
I guess I’ll forge ahead with my Duke interviews while I wait for JH and Oncotype results to return. This doctor felt I could wait “a few” months before initiating treatment. The Uro gave me a little more time.64 y.o. at Dx. BMI<25, 3/15/19 PSA 4.9, 4/25/19 3TMRI showing PIRADS 4 lesion, remainder of MRI negative, 5/14/19 MRI fusion biopsy showing Gleason 7 (3+4) favorable/intermediate, T2A,NX,MX. Consult with URO re: surgery. Consult with RO next. 2nd opinion biopsy at JH and Oncotype in process.
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,Age at DX 52. (8/17) PSA 4.4 Under AS. 4/17 PSA: 4.1 7/17 Bx 1 of 12 positive (2 Suspicious) G6 2% arises in PIN, markers CK5/14p63 T1c, ICD-10: R97.20 prostate Volume 67cc PSAD 0.07 11/17 ER trip for Urinary Retention, Now taking Dutasteride and Rapaflo 1/18 3T mpMRI with contrast Nothing Specific found. 3/18 PSA 2.01 6/18 PSA 1.40
noont, Seems like a great meeting with the type of doctor everyone deserves but doesn’t always get. Seems like a good plan if that’s what you end up choosing.Part I 2015 (Age 54) PSA: 20.8 Bx: All cores high volume G7 (4+3) RALP & Adjuvant RT Pathology: G8 (4+4), focal areas of 5; Positive margins; 3 LNs negative PSA nadir: 0.1 Steady PSA increase. June 2018: 22.3
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 Smith7/2018-66yo,PSA 4.1->5.1 8/2018-MRI, PI-RADS 5 8/2018-MRI Biopsy, 4+3 9/2018-CT/Bone clear 11/6/18-RALP @ St. Johns 11/2018-Post-Op Path G7 (4+3) 5% Tert Gr 5, pT3a pN0 Grade 3 Pos. Marg (SM+), EPE, <3mm, L=0.1mm? 11/2018-Decipher 0.47, Ave. Risk, 4.3%/4.8% 1/2019-Epstein-G9(4+5) Gr5 “Difficult to distinguish EPE vs intraprostatic incision, 3mm” Extent:pT2x 2/2019-PSA<0.10 4/2019-Begin ART
Edit: I didn't read through all the posts or see that the original date was a few months back. But I still highly recommend Dr. Joseph Busch at Prime Imaging in Chattanooga. Helping men with PCa is his passion. We won't use anyone else. His dedication to those with PCa is amazing in my opinion. Because they used MRI imaging for the biopsy he had 5 cores, three which were biopsied and two saved for the future. He also biopsied the lymph node at the same visit. He has given us more treatment information on PCa then our oncologist.
Sending positive thoughts and prayers for your journey on the PCa roller coaster.Husband: Initial PSA 74.6 11/2016 12/2016 - MRI guided biopsy, CT lymph biopsy, NM bone. Path: Metasiatic prostatic adenocarcinoma,lymphadenopathy Gleason 4+3=7 (90% 4) 33mm of tumor 100% (3 of 3 cores) Perineural invasion 3 bone mets. Treatments: Lupron Casodex; Docetaxel 2/2/17 6 doses. Casodex 8/17; switched to Zytiga 12/17 bone mets greatly diminished. PSA .01 6/19 Provenge Spring 2019
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!64 y.o. at Dx. BMI <25, 3/15/19 PSA 4.9, 4/25/19 3TMRI showing PIRADS 4 lesion, remainder of MRI negative, 5/14/19 MRI fusion biopsy showing Gleason 7 (3+4) favorable/intermediate, T2A,NX,MX. Consult with URO re: surgery. Consult with RO: complete and super informative. 2nd opinion biopsy at JH and Oncotype in process. 2nd opinion with Duke Cancer on June 28.
e.noont - Just a caution that you can over-study this a bit and get confused. For every report or paper that provides odds or percentages of something, there is another report that may be newer or older with different data and conclusions. Same with people’s experiences. You may be at a point where you can relax for a few weeks and start again then.7/2018-66yo,PSA 4.1->5.1 8/2018-MRI, PI-RADS 5 8/2018-MRI Biopsy, 4+3 9/2018-CT/Bone clear 11/6/18-RALP @ St. Johns 11/2018-Post-Op Path G7 (4+3) 5% Tert Gr 5, pT3a pN0 Grade 3 Pos. Marg (SM+), EPE, <3mm, L=0.1mm? 11/2018-Decipher 0.47, Ave. Risk, 4.3%/4.8% 1/2019-Epstein-G9(4+5) Gr5 “Difficult to distinguish EPE vs intraprostatic incision, 3mm” Extent:pT2x 2/2019-PSA<0.10 4/2019-Begin ART