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. A fusion biopsy was performed in late May and I just received those results last Thursday. I asked the urologist who did our Second Opinion at Johns Hopkins and although he thinks RP is the way to go (due to higher PSA of 10.18), he highly recommended Dr. Eggenger (Chicago). I did ask some questions about the study, if anyone is interested. The more often a doctor diagnoses and treats prostate cancer the more proficient they become. Identified an approximate 2 cm lesion of mostly Gleason 7 (3+4) with only 20% being 4, contained in prostate. BASE DATA: 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. You may choose to consider a second opinion if you: A new study by researchers at the Johns Hopkins University has found that second opinions did not change treatment choice among men diagnosed with low-risk prostate cancer. Obtaining a second opinion in Pathology can in a small percent of cases lead to a complete change in diagnosis in a wide range of conditions including non-cancerous growths, inflammatory disorders, infections, and cancer. Prostate cancer is an My question is--what importance do volume levels play in determining when to move from AS to treatment? Bring All Labs/Notes to Each Appointment. Men who sought second opinions because they were dissatisfied with their initial urologist were less likely to receive definitive treatment (odds ratio, 0.49; 95% confidence interval, 0.32-0.73), and men who wanted more information about treatment were less likely to report excellent quality of cancer care (odds ratio, 0.70; 95% confidence interval, 0.49-0.99) compared with men who did not receive a second opinion. Does 3+4 at some point typically evolve into 4+3 and also serve as a trigger point for moving from AS to treatment? Hillen MA, Medendorp NM, Daams JG, Smets EMA. We specialize in minimally invasive treatments for prostate cancer such as: We place a high priority on sparing the nerves and tissue around the prostate whenever possible. After a second opinion from both Johns Hopkins and Stanford, the two 4+3's were downgraded. However, there were no other suspicious areas on MRI. The local pathologist read the biopsy and said 3+4=7 10% pattern 4 for both lesions. 2/23 PSA 4.7/fPSA 12% taken for 4K score (lab #2) Second opinions from urologists for prostate cancer: who gets them, why, and their link to treatment . * Both Sloan and Johns Hopkins admit that large discrepancies are unusual, yet both stand by their opinions. First let me just say what so many others have previously stated, the thought of going on this journey alone is frightening, I cant imagine traveling this road alone. Value of Second Opinion in Prostate Cancer Uncertain, Says Hopkins Study. However, before getting a second opinion, its best to check with your insurance company to see if there are any limitations in coverage. Some specialists have more expertise and more experience than others. Ask us questions on this webpage. After a little experimenting I have been able to achieve a partial erection. I question the potential EPE and he said it didn't matter, but went ahead and ordered Oncotype. The James Buchanan Brady Urological Institute, Masks are required inside all of our care facilities, COVID-19 testing locations on Maryland.gov. Here's what JH says (same lesion). You May Like: Prostate Radiation Treatment Side Effects. They did another 3T-MPMRI (Siemens machine) and it showed a faint area, near the margin, and very close to the down stream sphincter of prostate. Then about a month later I started 28 fractions of Proton Radiation.It was painless. I also sent my biopsy slides to Johns Hopkins for a second opinion (Epstein's read was 3+4, but with lower pattern 4 involvement than the local pathologist.). Prostate, left medial apex: Your doctor is not a specialist in your type of . So, I asked the Radiologist if she will schedule one for me. Bookshelf Has anyone else run into this where the gleason score is favorable, but the genomic (specifically Oncotype) test is not? U.S. News & World Report ranked the institute #7in the country. Overall PIRADS Score: 2/5 Benign Processes: In circumstances where there may not be a single established standard of care, we can ensure the treatment plan integrates the most current, up-to-date data, Dr. Matasar says. Second opinion Biopsy came after FLA G-9. 2 cores from left base of 3+4=7 with only 5% involvement. This is why the prostate is important to the body. 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. They confirm everything except question whether one of the core samples is a 3+3 or 3+ 4. Since I have gotten so much out of this forum, I thought Id provide my story to help others. PSA: 4.7 ng/ml/PSA density: 0.27 ng/ml2 I was on active surveillance after a FLA procedure done in 2018. If the problem is unresponsive to other treatments, your doctor may suggest a surgical procedure. If youve received a new cancer diagnosis or arent seeing results from your current treatment plan, an expert second opinion can help you move forward with confidence. There were several areas of interest - but nothing in seminal vesicles, lymph, or bones. Benign Processes: Numerous publications show the clinical and economic benefits of obtaining a second opinion for Pathology specimens. I've been on AS since April 2016. - Prostatic adenocarcinoma, Gleason score 3+4=7 (grade group 2, pattern 4: 10%) involving 2 of 2 cores (medial core: 0.5 mm, 4%; lateral core: 1.5 mm, 10%), 1 mm to the blue inked tissue edge (the closer) No one at Hopkins has ever died of prostate cancer if he had Gleason 3 + 3 cancer." This sounds to me like they're not familiar with the Oncotype DX test and makes me wonder how common is the test. Masks are required inside all of our care facilities. I was referred to a urologist and tested again in April at 4.40. The people were great. There are so many different departments at Hopkins that I don't know the optimal department to contact. I am already positively surprised that I am still alive 4.5 years after my diagnosis. The Radiation Oncologist knew of Dr Busch (by now in Alpharetta, GA) and spoke highly of him. Dr. Nour is 100% sure that nothing has spread. We prioritized treatment as AS, FLA/TULSA (if a lesion ever presented itself), and Proton Beam Radiation. Below is the link with instructions and the authorization form for you to use with your doctor. 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. Johns Hopkins Medicine A commercially available genomic test may help oncologists better determine which patients with recurrent prostate cancer may benefit from hormone therapy, according to new research from the Johns Hopkins Kimmel Cancer Centerand 15 other medical centers. Request an Appointment 410-955-6100 With The Clinic by Cleveland Clinic, patients have access to Cleveland Clinics 3,500 specialists with extensive experience in all types of cancers. Lesion 2: Right mid anterior transition zone. Allow yourself the time to seek multiple opinions. For cancers that are less common, second opinions can offer more treatment options. Obviously the Covid 19 issue is playing a part in all of our decisions. Yet none of my doctors ever mentioned it! 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. At this time, I am leaning towards Active Surveillance or FLA. AS would be my choice, except that a total of three lesions, on both sides of Peripheral Zone, makes this controversial. A enlarged prostate can also cause blockages in the urethra. Reinterpretation of imaging scans and lab tests. The Johns Hopkins University, The Johns Hopkins Hospital, and Johns Hopkins Health System. This may include imaging, blood tests, prior treatment, and pathology reports. Urologists at the Johns Hopkins Brady Urological Institute can make the difficult process of deciding on a treatment plan easier. Four weeks after a radical prostatectomy for prostate cancer, he was back in the pool. An accurate diagnosis is essential to ensure the most effective treatment. Primary Gleason grade: 3 Emotional outlook is fragile at times and straight clinical approach of doctors does not help. Secondary Gleason grade: 3 Overall my PSA is between 4 and 10. Background: It got discussions started and questions answered. That's the good news. The Journal of the American Board of Family Medicine published a study in 2017 that found that many patients do not get a second opinion outside of their PCPs original referral2. Nor did I have any idea that the 1 core had 20% involvement and <5% pattern 4 involvement. You can call and speak with his assistant at: (410) 614-6330. Your Primary Care Physician referred you to your diagnosing urologist whom you now trust. Obtaining a second opinion on your pathology report is no different than getting a second doctors opinion, it is a must for all of us. Radhakrishnan A, Grande D, Ross M, Mitra N, Bekelman J, Stillson C, Pollack CE. Now Im still ignorant and dont really know a Gleason from a Duck, so when the Dr says your treatment is radiation or surgery Im devastated. Required fields are marked *, PHONE 310-827-7707 The results were ambiguous. Forty percent of the men obtained a second opinion from urologists, most often because they wanted more information about their cancer or wanted to be seen by the best doctor . Explore our state-of-the-art patient care facilities in the Sheikh Zayed Tower. Overall, obtaining second opinions was not associated with definitive treatment or perceived quality of cancer care. The linear amount of tissue with carcinoma is 11 mm A second opinion can help you make an informed, confident decision about your medical care. Treatment decisions for prostate cancer should not be rushed due to a mistaken belief that immediate treatment is required. My thoughts focus on the fact that I have a disabled son who needs my care. He spent an hour on the phone reassuring me that I didn't need to rush into anything, and they he'd love to scan me 6-8 weeks after my TRUS Biopsyhave to let the trauma and all the blood leave the prostate for a good image. G. Prostate, lesion #1, core biopsy: 5. Atrophy Second Opinions An accurate diagnosis is essential to ensure that the correct and most effective treatment is given. I had no idea there were second opinions and I didn't have a clue about Genomic testing, or even genetic testing. I opted to waive the biopsy, wait 1 year and test again. Day 7 after surgery I took my last pain pill. And collaborating with Johns Hopkins Medicine means we can provide you with second opinions, streamlined and guided access to clinical trials, and a proven track record of excellence in care. He is the past president of the International Society of Urological Pathology. Both Drs and nurses knew what they were doing and had lots of experience. There is no one-size-fits-all treatment for prostate cancer. 180 days after treatment PSA was .50. There are also many reasons why you may want to seek another opinion during the course of your cancer care. PELVIC LYMPH NODES: No adenopathy. Symptoms include leaking and discomfort. They find that one of my 5-10% Gleason 6 core is actually a 50% Gleason 7(3+4) and the MRI was so cloudy with blood from original biopsy they said they couldnt determine much. John, I was diagnosed on 11 December, 2013. Cleveland Clinics Virtual Second Opinions program connects you to an expert physician who specializes in your specific health needs. Anything I am overlooking or need to add to my list of considerations? Note that I'm trying to get a second opinion from Johns Hopkins but Mayo, where the biopsy was performed, appears incapable of processing my request. of tumor in the rectal prostatic angles. I have been drinking out of an information fire hose. He said that he saw what JHs was referring to but did not determine EPE for a variety of reasons. Men were asked if they obtained a second opinion from a urologist, and the reasons why. My involvement is below maximum of 15% of core. Low post-void residual volume is Just had my appointment today and they are pleased with the results, so far. Read books and realize as soon as they are published, they are outdated. But in the spirit of disclosure for those of you with BPH a TURP can complicate a future Radical Prostatectomy (or possibly Cryo) and increase the risk of side effect risks. I would love to hear from anyone who has been involved in the Chicago study. He turned to the Top Gun of Prostate Pathology: Jonathan Epstein, MD, the guru of Gleason scoring at Johns Hopkins University in Baltimore. My questions are: Though, for the most part the reports seem encouraging.I am curious if anyone has had something similar. Following application of the relevant exclusion criteria, 2365 respondents remained in the analytical cohort. Am I wrong? Doctors are skilled at pitching the treatment they specialize in. Got the fiducials placed, the Space-OAR gel placed, mold made, and had the pre-treatment MRI and CT Scan. And thanks again for making this such a great support group! This fluid causes the prostate to swell and cause a number of bladder-related symptoms. 3. In the United States, studies estimate 72 new cases of PN for every 100,000 people between the ages of 18 and 64 years old. Prostate, right lateral apex: Patients are often under the mistaken notion that they have to pick between their oncologist and MSK, but thats often not the case, Dr. Matasar explains. Further, among men with low risk disease, we did not observe a significant association between second opinions and receipt of definitive treatment or surgery. My goals are to control PCa, to minimize side effects, and to keep options open in the future. You May Like: Sbrt Radiation Therapy Prostate Cancer. The main purpose of the prostate is to produce semen, a milky fluid that sperm swims in. Find more COVID-19 testing locations on Maryland.gov. We provide second opinions on the full range of gynecologic cancers: Ovarian Uterine Cervical Vulvar Vaginal Fallopian tube Placental tumors Some peritoneal cancers Are considering a treatment that involves significant risks, such as surgery. As a Gleason 3 + 3, with 8 of 12 positive cores all with less than 30% cancer, and bilateral spread, I have determined that I cannot trust a blind biopsy in and of itself. However, there are other cases when a second opinion results in a very different diagnosis or set of treatment recommendations. * Other 12 slides not sent Their MRI was more sensitive and found there were actually 2 lesions close together that looked like one on the prior MRIs. Sought Johns Hopkins second opinion of pathology slides. So the pathologist suggested a second opinion. Masks are required inside all of our care facilities. decision on a single medical opinion or the first appointment you get, you may So, I believe I made the right choice. What are you doing about it? Dr. said pirad-5 and to prepare for bad news and probably around a Gleason 7 and that he is rarely wrong. Thank you for your participation! Us Too Prostate is a great club and many of you have helped me a lot already. Dr. Jonathan Epstein of Johns Hopkins University Hospital. Perineural invasion is identified Urology. 1. Second opinions apply to biopsies and imaging as well. The more accurate the information we have, the better our treatment decisions. not hear all the viable treatment options or receive the most up to date The total number of cores with carcinoma is 3 What are your opinions of what that is, and where to get it? So the pathologist suggested a second opinion. In terms of cancer, changes can be from cancer to benign (or vice versa) or from one type of cancer to another, which could . It is OK to be overwhelmed with info. Tumor Quantifications: JHs just said it was minimal less than 5%. 2 of the 12 samples showed High Grade PIN and one area showed "suspicious for low-grade adenocarcinoma". You have a rare or unusual cancer. I was confident I was making the right decision. 2018 May;115:133-138. doi: 10.1016/j.urology.2018.01.048. I have developed an "abscess" on my prostate. Also, Oncotype subsequently invalidated my results because they found in the history that I had a prior FLA. And by FAA Aeromedical Ruling, I'd need a few post procedure reports before being cleared to fly again.) Right mid anterior transition zone (PIRADS 2). I still have some urgency and frequency issues, but I am not complaining too bad. I really just want the results of their innovative PTEN test. The primary goal is to be cured with the least toxic, most effective approach. If the enlarged prostate is not completely removed, it will shrink. It worked great (with negative pathology of the tissue) and fixed a lot of nasty symptoms and risks. If youve received a new diagnosis or arent seeing results from your current treatment plan, a second opinion can help you move forward with confidence. - Johns Hopkins Medicine -- Get a Second Opinion NOTE: THINK THIS LOWERS MY PSA DENSITY SOME IF MY GLAND ISN'T a 17CC PEANUT! A second opinion can accomplish a number of things. I also changed my diet to plant based food, started juicing, and started taking supplements (think Turmeric, Green Tea, etc.). My plan is to choose quality of treatment over cost of the treatment. The only prescriptions I take are for GERD (Protonix), cholesterol (Atvorstatin), and allopurinol for an episode of gout that I got while doing physical rehab for a bad tibia break (I shattered my tibia plateau 2/2020 and have pretty much recovered). Everything seems to be on track to remove the cancer and be cured! In severe cases, a catheter may be required to relieve the symptoms. Its in your best interest to ask for another look at a cancer diagnosisIf youve recently been diagnosed with cancer, its wise to ask for a second opinion on your pathology specimen.Johns Hopkins researchers with the Urological Pathology Consult Division, led by Jonathan Epstein, M.D., first reported on biopsy errors a decade ago, when they found a margin of error in prostate cancer diagnoses large enough to give them pause. A doctor at MSK can collaborate with another doctor to offer support and help ensure the best outcomes. Ask your doctor for a copy of your complete medical record. 2011 Feb;29(1):3-9. doi: 10.1007/s00345-010-0602-y. MRI RE-READ #1 (well known radiologist, but free advice over phone, but no written report): Grade Group: 1 I have actually had a second opinion a while back from Dr. Bush. Avoiding obsolescence in advanced prostate cancer management: a guide for urologists. Our OB-GYNs, maternal-fetal medicine specialists, and pediatricians collaborate regularly with the Johns Hopkins team getting second opinions and access to hundreds of clinical trials. Johns Hopkins is home to many of the world's leaders in Pathology. Two 1cc tumors, gleason score 3+4 each, one in each lobe. 2. In some situations, insurers will even insist on a second opinion. Laparoscopic prostatectomy: The prostate is removed with a miniature telescopic instrument, which allows for a quicker recovery, Robotic surgery: This breakthrough technology, which often is used for prostatectomy surgery, requires only a few small incisions. Hope to hear from a bunch of people. I would feel much more comfortable, if the numbers stay the same, being involved in a recognized Active Surveillance Program. He also said I would tolerate any option well based on my age and health. Notice of Privacy Practices(Patients & Health Plan Members). Disclaimer. Race and ethnicity. Unlike pathology labs in most hospitals, Jonathan Epstein's lab at Johns Hopkins has pathologists who specialize in reading prostate tissue samples. And just this week, 1 YEAR post treatment, it is .46. Benign Processes: Prostate, left medial base: If they have an enlarged colon, their physician can perform a TURP procedure. This is often the case when the primary physician advises an expensive treatment. Are you sure you want to block this member? In adjusted models, obtaining a second opinion was not associated with receipt of definitive treatment . FLA DONE AT FIRST BIOPSY G- 7. Slightly Peripheral Zone: The peripheral zone is of normal homogeneous prolonged T2 and there are no suspicious focal areas of I understand that patient privacy is a priority (I'm actually a privacy lawyer), but surely there are patients who would give consent and be happy to talk with a prospective patient about their experiences? Our gynecologic pathology team can also help determine if the tumor is localized or has metastasized from another region of the body. Reinterpretation of imaging scans and lab tests. You're also at greater risk of prostate cancer forming before age 50. After extensive discussion of his management options with his local urologist, primary care physician, and radiation oncologist, he also sought a second opinion at the Johns Hopkins Prostate Cancer Multidisciplinary Clinic at Sibley Memorial Hospital.The patient expressed an overwhelming desire to avoid surgery and any other invasive treatments. Adenocarcinoma: Greetings gentlemen! Centro Diagnostico Italiano , Milan, Italy, Manfred Dietel, M.D.Institute of Pathology Charit, Humboldt University of Medicine, Berlin, Germany, Jonathan I. Epstein, M.D.The Johns Hopkins Medical Institutions, Baltimore, MD, Robert J. Kurman, M.D.The Johns Hopkins Medical Institutions, Baltimore, MD, Elizabeth Montgomery, M.D.The Johns Hopkins Medical Institutions, Baltimore, MD, Manuel Sobrinho-Simes, M.D.University of Porto, Porto, Portugal, Ronald S. Weinstein, M.D.University of Arizona, Tuscon, AZ, Franco VisinoniMilestone Medical Technologies, Bergamo, Italy, Read Also: Nhs Prostate Cancer Risk Calculator. While I now concluded we need to find "it", I researched the best approach to see what is really going on and to do this safely. This is the most common urinary tract problem in men under 50, and the third most common in men over 65. Unbelievable that this happened!!! Ramsey SD, Zeliadt SB, Fedorenko CR, Blough DK, Moinpour CM, Hall IJ, Smith JL, Ekwueme DU, Fairweather ME, Thompson IM, Keane TE, Penson DF. I am an airline pilot with exposure to radiation, jet fuels/fumes, etc. I am relatively new to this forum and trying to educate myself as to my best course of treatment. 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. Dr also stated he was able to totally spare one of my nerves, but to get margin may have damaged one. In other words, can I have a team here in Wisconsin yet travel elsewhere to get my MRI? AHN patients have unprecedented access to the Johns Hopkins Center for Fetal Therapy. Either the patient or the primary physician can initiate the process of getting a second opinion. I luckily found this webpage and I started reading everything I could get my hands on. 5. I suggest for all that hear, "you have cancer" that you seek more opinions! Note respondents were able to choose more than one reason. My family doctor was alarmed because such a steep increase in prostate-specific antigen could be a sign of prostate cancer. Had third MRI in July 2019 this time at Mayo which I believe does a better job than SMIL.
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