I was never under the misconception that I'd never have to do something, but I was going to wait until I needed to do something. The site is secure. And thanks again for making this such a great support group! For cancers that are less common, second opinions can offer more treatment options. Metastasis. I tried to send the samples out for genetic testing to Prolaris and Decipher, but there was an ordering error and they never went thru. Had my PSA remained static I'd have remained on AS and had I grown a Target Lesion I'd have sought focal treatment.This science is emerging and only getting better. Generally, the symptoms can stabilize over time. Getting a second opinion from Johns Hopkins, is it free or does one have to pay for it? I am doing one in 6 weeks, regardless. For a second opinion on the results of your prostate biopsy, there is no place better to get one than from the well known prostate pathologist, Dr. Jonathan Epstein at Johns Hopkins. Brachytherapy Experience with Dr. Albert Chang at UCLA? If the problem is unresponsive to other treatments, your doctor may suggest a surgical procedure. Pingback: PROSTATE PROS Episode 6: Breakthroughs in Radiation PROSTATE ONCOLOGY SPECIALISTS, Pingback: Like Man, Im Tired (Of Waiting): The How-to Guide for Men with Prostate Cancer PROSTATE ONCOLOGY SPECIALISTS, Your email address will not be published. - PI-RADS for this lesion = 4/5 Their opinions are widely held to be definitive. Cancer patients are encouraged to obtain second opinions before starting treatment. I requested a second opinion from Johns Hopkins and they found 1 lesion was 3+3=6 and the second lesion was 3+4 =7, with less than 5% pattern 4. He turned to the Top Gun of Prostate Pathology: Jonathan Epstein, MD, the guru of Gleason scoring at Johns Hopkins University in Baltimore. Benign prostatic tissue The Radiation Oncologist knew of Dr Busch (by now in Alpharetta, GA) and spoke highly of him. A second opinion is a review of the cancer diagnosis and the treatment recommendations of the physician who is treating the cancer by another, independent physician. They confirm everything except question whether one of the core samples is a 3+3 or 3+ 4. Benign Processes: and I have already proven to myself that my body is good at cell mutation, so I wanted to be careful.At the 3 year mark (6 months after last MRI), my PSA spiked to > 6. - High grade prostatic intraepithelial neoplasia (HGPIN) Dr. said pirad-5 and to prepare for bad news and probably around a Gleason 7 and that he is rarely wrong. PSA had increased to 5.4. Covid turned the 1 year into 16 months and PSA tested at 7.44 in August 2020, followed by another referral back to the urologist. MM, Much to my dismay my 4th targeted biopsy Oct 12 revealed 5% G4 (upgraded from Grade Group 1 to 2 (Gleason 3+4 intermediate/favorable). I say bullshit to them. You feel healthy, you arent in pain, you Lesion 1: Left mid-base transition zone. I have had a CT of the pelvic area - negative and a whole body bone scan - negative. Got my physical and normal DRE with new Dr. No issues identified. Oncologist. Hoping that after I go through this that my advice to others will be able to guide them and that they can learn from my experience, as I feel I am gaining a solid foundation from both a practical and mental standpoint. Second Opinions & Consultations - Brain Tumor | Johns Hopkins Pathology I also changed my diet to plant based food, started juicing, and started taking supplements (think Turmeric, Green Tea, etc.). Patient-Driven Second Opinions in Oncology: A Systematic Review. This Dr is in charge of active surveillance program at JH so I knew that he wouldnt recommend surgery unless it was really needed. Total Gleason score: 6 I opted to waive the biopsy, wait 1 year and test again. It has been 2.5 years and the PSA has still not doubled as well. I was to follow up with my new Urologist (another surgeon) for 3 months PSA checks and annual 3T-MPMRI.My PSA checks were static and the next year's MRI looked just like the first. For this study, published in the journal Cancer, 2386 men in the greater Philadelphia area, who were diagnosed with prostate cancer between 2012 and 2014, responded to survey questions. I'm currently in the process of getting an appointment set up with a Dr. Wang at UCLA. My most recent biopsy resulted in two cores with Gleason 4+3=7 and one with 3+3=6. I had no idea there were second opinions and I didn't have a clue about Genomic testing, or even genetic testing. They basically said it didn't matter. However, a new study by researchers at the Johns Hopkins University has found that second opinions did not change treatment choice or the persons perception of the quality of care they receive, at least among low-risk men. It starts many years ago. Out of 12 cores, 9 are positive. Consult Fees In some cases, additional testing may be required. He turned to the Top Gun of Prostate Pathology: Jonathan Epstein, MD, the guru of Gleason scoring at Johns Hopkins University in Baltimore. Though, for the most part the reports seem encouraging.I am curious if anyone has had something similar. Do any of you have an opinion or actual experience with any of the three listed below? First 6 week PSA is undetectable. LESION 2 Prostate cancer is the second-most diagnosed cancer in American men. 180 days after treatment PSA was .50. We had the 3T MRI (no coil) and MRI guided biopsy at Sperling in NY, and then had a 2nd Opinion done by Johns Hopkins. Over kill and redundancy I know, but it's my money, my prerogative. A doctor at MSK can collaborate with another doctor to offer support and help ensure the best outcomes. One core had 5%, one 20%, and one 40%. Dont Miss: Is Coffee Bad For Your Prostate. To learn your stage of prostate cancer, take the staging quiz on keytopc.com. Does 3+4 at some point typically evolve into 4+3 and also serve as a trigger point for moving from AS to treatment? - T2 = 3/5 Blessings. I officially joined the club with diagnosis on March 21: three small lesions with a GS 6 on one side and both a GS 6 and a GS (3+4) 7 on the other side. Medical record collection from doctors and hospitals. If a targeted biopsy is planned, this lesion can be sampled at the same time. Rectal cancer.A small trial that saw 18 rectal cancer patients taking the same drug, dostarlimab, appears to have produced an astonishing result: The cancer vanished in every single participant. Visit and Like ZERO - The End of Prostate Cancer on Facebook, Sign up to receive emails and news from ZERO - The End of Prostate Cancer, Search prostate cancer clinical trials and studies. Netto points to prostate cancer as an example: If your diagnosis changes from a higher grade to a lower grade cancer, it could mean having the option to avoid radical treatment.Seeking second opinions is becoming standard practice, and it is mandatory at Johns Hopkins. Some men have minimal or no symptoms at all. and I have already proven to myself that my body is good at cell mutation, so I wanted to be careful.At the 3 year mark (6 months after last MRI), my PSA spiked to > 6. I made the appointments. NOTE: THINK THIS LOWERS MY PSA DENSITY SOME IF MY GLAND ISN'T a 17CC PEANUT! There are also many reasons why you may want to seek another opinion during the course of your cancer care. JAMA Netw Open. Four had 60-70%, five have between 5-10%. You may be concerned that the cancer will grow rapidly out of control before you are able to get a second opinion. This has only low-level nonspecific activity with SUV max of 2.05 and may be due to degenerative changes at the symphysis pubis." And, even working in a fairly technical field myself, I was amazed at the technology and precision of that Proton Machine. Benign fibromuscular stroma; no prostatic glands are identified There is no one-size-fits-all treatment for prostate cancer. Wondering if any of the "gurus" here want to take a stab at looking at this and see if they agree that it says what I think it says (I will be following up with doctor(s) to get their opinion, and I waive all HIPAA rights by allowing this to be seen). !I've pasted a previous update below for background.I just got my PSA results and the numbers are still trending in the right direction. Background: This shows very high signal intensity on the diffusion-weighted How could this compare using only partial slide re-reading? Therefore, the value of these second opinions remains unknown. HMO members may also be discouraged from trying expensive treatments that have only a small chance of success, even if that chance is real. The side effects of the cut, radiate, hormone regime are unacceptable to me. That being said, they can be a beneficial member of the treatment team. After all, it seems like good idea to deal with your cancer sooner rather than later. Olver I, Carey M, Bryant J, Boyes A, Evans T, Sanson-Fisher R. BMC Palliat Care. If anyone has used him, please let me know what your experience was like. I really just want the results of their innovative PTEN test. Through the AHN Cancer Institute, you benefit from personalized treatment in your community, close to home, from your dedicated care team. The results of the MRI said they found a PYRAD 5 lesion, but did not find any cancer outside prostate. I find that when I'm trapped in the cockpit not able to use the bathroom for a long time is when I experience that most. Your doctor is not sure what is wrong with you. One of the problems with second opinions is that insurers may not cover the expense. Does this also include HIFU, Cryoablation? So fingers crossed. Even if someone is being seen at a different academic center, the trials and other treatment options that we offer here may be different. Check Biopsy and Imaging Results for Accuracy. Ramsey SD, Zeliadt SB, Fedorenko CR, Blough DK, Moinpour CM, Hall IJ, Smith JL, Ekwueme DU, Fairweather ME, Thompson IM, Keane TE, Penson DF. So, I also sent this MRI result to Johns Hopkins for a second opinion. Get a Second Opinion: Johns Hopkins Kimmel Cancer Center Just got my pathology results. MEASUREMENTS: I am also doing a vegan diet with additional complementary substances. PROSTATE PROS Episode 6: Breakthroughs in Radiation PROSTATE ONCOLOGY SPECIALISTS, Like Man, Im Tired (Of Waiting): The How-to Guide for Men with Prostate Cancer PROSTATE ONCOLOGY SPECIALISTS, Considering Prostate Cancer Clinical Trials? 2020 Jul 21;19(1):112. doi: 10.1186/s12904-020-00619-9. 2. I luckily found this webpage and I started reading everything I could get my hands on. Dr. Dan Sperling - New York. 10. The lesion also shows focal increased permeability. My Oncotype rating was GPS 54, with a 26% chance of metastisis within 10 years. doi: 10.1002/cncr.30412. !I'll try editing a previous post and see if it reads like a journal instead of creating a new thread every update.I just got my PSA results and the numbers are still trending in the right direction. The study included nearly 2,400 men in the Philadelphia area recently diagnosed with localized prostate cancer. Then about a month later I started 28 fractions of Proton Radiation.It was painless. Of course, my old school Urologist recommended surgeryHe, of course, knew the best robotic surgeons around.Anyway. I could not get a definitive answer from them on how much, how many cells, or any information. I appreciate all the input because I am a little overwhelmed and confused as to the best course of treatment. It's really that simple! Your current doctor will frequently suggest a second opinion, if only to confirm the recommended course of action. I assume the data on gleason scoring is much more robust/reliable than genomics as it has been around longer and used more extensively. Surprisingly, while one in nine men will get diagnosed with prostate cancer in their lifetime1, there are very few doctors who specialize exclusively in treating prostate cancer. Has anyone else run into this where the gleason score is favorable, but the genomic (specifically Oncotype) test is not? Anyone else encounter something like this? Video consultation and written report from your expert. As a result, patients struggle to differentiate bias from fact. Johns Hopkins Health - Second Opinions, Second Chances - Hopkins Medicine Some specialize in reading only slides that come from a specific organ while others are generalists who read many different pathology slides from many different organ systems. Prostate, right medial apex: It worked great (with negative pathology of the tissue) and fixed a lot of nasty symptoms and risks. The all-inclusive cost for a virtual second opinion for patients in the U.S. is $1,850. I recently sent my Pathology Slides to Dr. Epstein for a Second Review. In the mean time my PSA was movingno longer static, but never back up to 6. I was never under the misconception that I'd never have to do something, but I was going to wait until I needed to do something. I'll post the whole thing, my doc and my own comments, and then cut/paste all my MRI results in case anyone REALLY liked data. You're also at greater risk of prostate cancer forming before age 50. Even at the age of 48, he thought I would be a good candidate for AS. How to Get a Second Opinion Our team at Johns Hopkins has a dedicated service to interpretation of brain tumors and render second opinions on a daily basis. -------------------------------------------------------- This may cause a conflict of interest between the patient and the HMO, especially if very expensive treatment is only available outside the HMO system. Some docs say clean up the prostatitis while others tell me to avoid overuse of Cipro as it loses its effectiveness over time. While I have three lesions, they are small and, without 3T mp MRI, might not have been discovered. Grade Group: 2 Second opinions not likely to change prostate cancer treatment Men often seek second opinions from urologists before they initiate treatment for their newly diagnosed prostate cancer. Many researchers believe PTEN present is a strong brake on I'd like to talk with former patients who have gone through the procedure. Request an Appointment 410-955-6100 Six weeks later I have the biopsy in his office and a week later I get the results. Before 2nd opinion"Sclerotic change at the right pubic bone with max SUV of 1.4." Conclusions: Your current doctor will frequently suggest a second opinion, if only to confirm the recommended course of action. So, I go one better, I call up Johns Hopkins and find a Dr who does DaVinci Prostate Surgery. This is often the case when the primary physician advises an expensive treatment. 9. However, there are also many more options for treatment and these options are more complicated than in the past. We have a surgery date set up for the end of July at Johns Hopkins (our second opinion team).His stats:63yo, non smoker, 167lbs, Vegetarian/Vegan diet no other known health issuesWalks dogs for a living and cares for our small farmPSA 3.3 (Jumped from 1.6 in a year)Biopsy Scores 3+5, 4+3. I'm trying to figure out why the PSA keeps rising. Epub 2010 Oct 20. Comments appreciated, Another type of prostate issue is chronic prostatitis, or chronic pelvic pain syndrome. Anything I am overlooking or need to add to my list of considerations? First MRI done in June 2016 by Scottsdale Medical Imaging - nothing found. In some situations, insurers will even insist on a second opinion. Whats right for you will depend on the stage of the cancer, your level of risk and your general overall health. Thanks to all of you for sharing! Have been told a health condition is not treatable. Right mid anterior transition zone (PIRADS 2). I'm turning 58 in one week. In the mean time my PSA was movingno longer static, but never back up to 6. Benign prostatic tissue ---------------------------------------------------- ---------------------------------------------------------- His reasoning over the last couple of years is that the suspected lesion was not changing in size at all. I had FLA done after first biopsy which staged me at 3+4 = 7. There were several areas of interest - but nothing in seminal vesicles, lymph, or bones. Lymph nodes: There is no suspicious lymphadenopathy in the pelvis. Seminal vesicles and other margins are negative for tumor. The Radiation Oncologist said he would be comfortable waiting a little more, but he wasn't confident that I'd grow a target lesion, nor would I be able to wait years before having to do "something." No extraprostatic extension. If these do not work, your symptoms could progress and become chronic. Benign fibromuscular stroma; no prostatic glands are identified If you have received a diagnosis or recommendation for treatment and want another opinion, our service can help you make a more informed decision. Some specialists have more expertise and more experience than others. I'm leaning towards SBRT. Last checkup (July 2022) my PSA was .46 and it is currently at .32.I am still eating primarily a plant based diet (only lean meats/cheeses/eggs about 10% of my diet) and maintaining steady weight and I am still quite active physically.As for symptomswith 5mg Daily Cialis the occasional ED symptoms have pretty much gone away. Grade Group: 1 TZ zone more beneficial, but fairly large compared to whole gland and proximity to capsule edge would likely mean treatment would be suggested. However, there are other cases when a second opinion results in a very different diagnosis or set of treatment recommendations. Without the genomic test I have I lesion 3+3=6 and another, 3+4=7, with less than 5% pattern 4, and an MRI that shows no ECE, no other suspicious lesions and questionable cellular EPE based upon disagreement of pathologists. This may cause a conflict of interest between the patient and the HMO, especially if very expensive treatment is only available outside the HMO system. The results seemed fairly benign and my urologist and I decided to continue to monitor with 2 more PSA tests and then consider an MRI in April 2021. (I think that it was easier to see because Mayo's MRI technology and procedures are better than SMIL's.) Yet none of my doctors ever mentioned it! I want to insure that the Imaging was read correctly and nothing was overlooked or missed. Overall, obtaining second opinions was not associated with definitive treatment or perceived quality of cancer care. My questions are: I choose surgery over radiation because you can do surgery and then radiation, but it is almost impossible to do it the other way around. You think another treatment might be available. I have developed an "abscess" on my prostate. Of these, 40% obtained second opinions, most commonly because they wanted more information about their cancer (50.8%) and wanted to be seen by the best doctor (46.3%). Second Opinion Results, Johns Hopkins biopsy reading of 2 slides sent by Sloan: Doctors are skilled at pitching the treatment they specialize in. Thanks, Overall PIRADS Score: 5/5 Find more COVID-19 testing locations on Maryland.gov. Since I have gotten so much out of this forum, I thought Id provide my story to help others. Johns Hopkins Prostate Cancer Second Opinion The out-of-pocket cost may be in the $300 range (insurance may not cover it), and it is a simple matter to call your urologist to forward the slides to them. He adds that second opinions also can provide insight into topics like clinical genetics and family risk or issues related to complementary or integrative medicine approaches to manage symptoms. Some men may have an enlarged prostate but not notice it. With The Clinic by Cleveland Clinic, patients have access to Cleveland Clinics 3500 specialists. Two things you learn here is get a second opinion from Johns Hopkins on biopsy and get treated at Center of Excellence. The urologist/surgeon indicated that other forms of treatment like TULSA are not options since my cancer is multifocal. I applaud Dr Scholz for his dedication and explanation of such a complex cancer, that has not had his common sense help available for men with prostate cancer. (Scores above 55 have a greater than 50% chance of finding clinically significant cancer on a biopsy) The biopsy showed 2 or 3 cores containing HG PIN but no cancer. Metastatic disease considered less likely for this pattern. Diffusely abnormal appearance of the prostate may reflect prostatitis, which can obscure underlying prostate cancer. When I inquired with the oncologist that I had selected for my therapy before receiving the second opinion whether I would be a candidate for Active Surveillance considering the downgrading, she said 'no' due to the intraductal component. (The pathology report from Cedars-Sinai kept my diagnosis at 3+4, but a second opinion at Johns Hopkins upgraded me to 4+3.) Thanks for considering. In the rare chance a baby needs highly specialized care, the team at Johns Hopkins is available to treat rare and complex conditions through breakthrough fetal procedures. If they do not cover this cost and you must pay out of pocket, keep in mind that a second opinion could save you from having to pay (financially and physically) for additional treatment down the line.