John. Whether you want expert confirmation, lack understanding or confidence in your treatment plan, have a rare or unusual type of cancer, your cancer isnt responding to current treatment its reassuring to know that you have options through a second opinion. One of the bits of advice the group regularly dispenses is for men to get a second and even a third opinion if you have doubts about the first opinions rendered by your urologist, or your pathologist, or your radiologist, its always okay to seek out a second opinion. The margin of error is 1.4 percent, which is equivalent to 30,000 cancer diagnosis mistakes annually in the U.S. Of 6,171 biopsy slides sent since late 2008 for a second review at Johns Hopkins, pathologists disagreed with the diagnosis on 86 of them. Lesions are all small or very small. Anyway, I'm reaching out to this group to see if anyone would be willing to chat with me about their brachytherapy experience at UCLA (even to talk me out of it). And, even working in a fairly technical field myself, I was amazed at the technology and precision of that Proton Machine. By Dec 2019, my PSA reached 4.13. In severe cases, a catheter may be required to relieve the symptoms. They want him to start radiation 25 sessions and chemo pills of Casodex 50 mg 28 pills. 3T MRI with coil is done initially, along with a TRUS biopsy. Epub 2010 Oct 20. But you have to do both. Patients may experience a fever or chills as a result of the infection. 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. 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. I'm trying to figure out why the PSA keeps rising. Overall my PSA is between 4 and 10. Some men have minimal or no symptoms at all. 4: Prostate, right medial base 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." Inflammation of the prostate can affect the bladder and result in discomfort and other symptoms. Enter the last name, specialty or keyword for your search below. Learn more: Vaccines, Boosters & Additional Doses | Testing | Patient Care | Visitor Guidelines | Coronavirus. I had FLA done after first biopsy which staged me at 3+4 = 7. 1. This teamwork ensures the best possible patient outcomes. Keywords: U.S. News & World Report ranked the institute #7in the country. By basing a treatment FYI-We are also considering the trial at Princess Margaret Hospital in Toronto. Even if someone is being seen at a different academic center, the trials and other treatment options that we offer here may be different. IMPRESSION: I also changed my diet to plant based food, started juicing, and started taking supplements (think Turmeric, Green Tea, etc.). Two weeks later I meet with my Johns Hopkins Dr. This is why the prostate is important to the body. What have your doctors told you? And by FAA Aeromedical Ruling, I'd need a few post procedure reports before being cleared to fly again.) Primary Gleason grade: 3 They confirm everything except question whether one of the core samples is a 3+3 or 3+ 4. What are your opinions of what that is, and where to get it? With world-renowned expertise, multidisciplinary specialists and the latest data, we partner with you to make informed decisions about managing your prostate cancer. John, I was diagnosed on 11 December, 2013. 7: Prostate, left lateral apex If the problem is unresponsive to other treatments, your doctor may suggest a surgical procedure. Have you heard of PRECISE follow up score for an MRI? At this point, I am convinced I made the right treatment choiceOHFOR THOSE THAT DON'T KNOW, THE VA HAS MADE REPRODUCTIVE CANCERS A PRESUMPTIVE CONDITION FOR THOSE THAT SERVED IN MOST OF THE WAR ON TERROR LOCATIONS.Good luck fellas and my prayers are with all of you having to contend with this disease. Disclaimer. 6. In those cases, patients are tremendously grateful for having received the advice and encouragement to get a second opinion, Dr. Matasar adds. The site is secure. Total Gleason score: 6 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. Masks are required inside all of our care facilities. I trust the second opinion Dr. Bush gave. If you're seeking a second opinion on treatment (see below), the specialist you choose often will be able to order a pathology second opinion for you, through his or her hospital's pathology department. I have completed an exhaustive research effort on Prostate Cancer and PCa treatments. Brief MRI history. Dr. said pirad-5 and to prepare for bad news and probably around a Gleason 7 and that he is rarely wrong. Seeking second opinions is becoming standard practice, and it is mandatory at Johns Hopkins. 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.). very activerun/cycle 6 days a week So, I made an appointment at Emory Proton Center (Atlanta, GA) and got their opinion. 30%/40% or higher)? official website and that any information you provide is encrypted Here are seven tips for seeking second opinions for prostate cancer: 1. THANKS! My goals are to control PCa, to minimize side effects, and to keep options open in the future. G. Prostate, lesion #1, core biopsy: So off I went to see a community urologist who performed a needle biopsy in his office. If they have an enlarged colon, their physician can perform a TURP procedure. Mayo's report came back with the same PI-RADS 4 with the wording that it was more conspicuous but unchanged. Many thanks for that. 3. That being said, they can be a beneficial member of the treatment team. About 80 percent of prostate cancers are diagnosed at a localized stage, which means that the cancer hasnt spread outside of the prostate. I would feel much more comfortable, if the numbers stay the same, being involved in a recognized Active Surveillance Program. Also, their protocol would be another biopsy, but he was comfortable with the image and velocity of PSA that he didn't have to have one to start treatmentand I was pretty hesitant (given the image and PSA) to take ADT, and didn't see a biopsy changing my mind regarding treatment and/or ADT.Oh. In order to receive appropriate treatment, patients must understand the treatment options that are available. An official website of the United States government. DRE is always normal. 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. PELVIC LYMPH NODES: No adenopathy. D. Prostate, left base, core biopsy: Axial T1-weighted images of the pelvis show no bony or bulky nodal disease. No extraprostatic extension. 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. 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. Director of Surgical Pathology- Johns Hopkins, http://pathology.jhu.edu/department/services/secondopinion.cfm, The guy I used along with everyone else is Jonathan Epstein, M.D. At the Johns Hopkins Medical Institutions, he is Professor of Pathology, Urology, and Oncology the recipient of the Reinhard Chair of Urological Pathology and Director of Surgical Pathology. Dr. Nour - Emory in Atlanta. What is NOT OK is quitting or avoiding the bad news, or handing the entire decision over to someone else.Good luck fellas! He turned to the Top Gun of Prostate Pathology: Jonathan Epstein, MD, the guru of Gleason scoring at Johns Hopkins University in Baltimore. Have a condition that isnt improving or is getting worse, despite treatment. 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. Keep in mind that not all PCPs are knowledgeable about prostate cancer or know the skill levels of all the specialists in the field. I have been drinking out of an information fire hose. Ask your PCP to refer you to several different types of treating doctors before making a treatment decision. During your visit, our specialists will review your medical records, diagnostic tests and other information provided by you or your current physician. LESION 1 I assume the data on gleason scoring is much more robust/reliable than genomics as it has been around longer and used more extensively. AHN patients have unprecedented access to the Johns Hopkins Center for Fetal Therapy. My experience at Johns Hopkins was awesome. 2nd opinion"Sclerotic change at the right pubic bone with max SUV of 1.4." * Other 12 slides not sent * Size: 1.5 cm Even if I go the radiation route, should I try for Proton radiation or some other type? 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. * Perineural Invasion also detected When I read the forums and questions on this site everyone mentions their Gleason Score from their biopsy. Ask us questions on this webpage. Prostate, left medial apex: We surveyed men who were diagnosed with localized prostate cancer in the greater Philadelphia area from 2012 to 2014. Slightly 2021 Sep 24;11(9):e044033. 2nd opinionBone Scan:"Mild increased activity is seen in the right symphysis corresponding to the abnormalities on the prior PET/CT examination. Therefore, the value of these second opinions remains unknown. C. Prostate, right apex, core biopsy: You're also at greater risk of prostate cancer forming before age 50. 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. Explore our state-of-the-art patient care facilities in the Sheikh Zayed Tower. We are vaccinating all eligible patients. 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. If a targeted biopsy is planned, this lesion can be sampled at the same time. The prostate gland is slightly enlarged secondary to transition zone hyperplasia (25cc total) There are also many reasons why you may want to seek another opinion during the course of your cancer care. A man with a father or brother who had prostate cancer is twice as likely to develop the disease. By taking the extra time to seek a second opinion, you have a better chance at finding the most up-to-date approach and an experienced doctor. Benign prostatic tissue Some men may have an enlarged prostate but not notice it. 5. What are you doing about it? Thank you for your participation! Be sure to confirm your diagnosis at a center of excellence. I just received a second opinion report from Johns Hopkins. Low post-void residual volume is If anyone has used him, please let me know what your experience was like. Accessibility Dont Miss: New Treatments For Stage 4 Prostate Cancer. Remember if you ship them include the following information: You May Like: Blood In Urine After Prostate Biopsy. Did robotic radical prostatectomy 1/25/12. Fear, confusion and uncertainty set in. This is the most common urinary tract problem in men under 50, and the third most common in men over 65. So the pathologist suggested a second opinion. 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. And by FAA Aeromedical Ruling, I'd need a few post procedure reports before being cleared to fly again.) information. doi: 10.1001/jamanetworkopen.2020.28320. Overall, nearly 80% of men received definitive treatment 76.5% of men who obtained a second opinion from a urologist received definitive treatment compared to 81.6% who did not . 3. 2. Further, among men with low risk disease, we did not observe a significant association between second opinions and receipt of definitive treatment or surgery. At that point I agreed to the TRUS biopsy which I had on October 10, 2020. The TRUS biopsy is behind me, the second opinion from Johns Hopkins is behind me, and its time for next steps. Dont Miss: Function Of The Prostate Gland And Seminal Vesicles. It is best to begin by talking with the doctor who made your initial prostate cancer diagnosis. Dr. Erick Walser at University of Texas Medical Center. Call us with any questions: 410-955-2405, ext. Cleveland Clinics Virtual Second Opinions program connects you to an expert physician who specializes in your specific health needs. Find more COVID-19 testing locations on Maryland.gov. Get directions, important phone numbers, locations and more. Future study is needed to determine when second opinions contribute to increasing the value of cancer care. Consultation with your nurse care manager. Further, among men with low risk disease, we did not observe a significant association between second opinions and receipt of definitive treatment or surgery. Urology. 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. Not all cancers are the same and not all treatment plans are absolutely clear. Prostate, left lateral apex: The study was published online Nov. 7 in the journal Cancer. Time moves fast when dealing with cancer, but Doctors dont. I was offered to have my first biopsy sent to Johns Hopkins for second opinion and said why not? which came back with Gleason 9 three weeks after having the what we thought was G-7 ablated. Seminal vesicles are normal. I worked out every day. However, there are other cases when a second opinion results in a very different diagnosis or set of treatment recommendations. Which Patients Report That Their Urologists Advised Them to Forgo Initial Treatment for Prostate Cancer? Anyone with insight into this and advice? Check Biopsy and Imaging Results for Accuracy. The purpose of starting this discussion is to gather peoples thoughts and opinions and actual experiences with Prostate Focal Laser Ablation. I also changed my diet to plant based food, started juicing, and started taking supplements (think Turmeric, Green Tea, etc.). Find more COVID-19 testing locations on Maryland.gov. Doctors are skilled at pitching the treatment they specialize in. Especially opinions other than those of the first Urologist you see. Luckily, his report co-coincided with the original QDx report. I retested in January 2019 and scored 4.20. Mohamad Allaf, M.D., answers questions about prostate cancer diagnosis and treatment options and discusses robotic prostatectomy at Johns Hopkins. The results of the MRI said they found a PYRAD 5 lesion, but did not find any cancer outside prostate. Depending on your location, you may be able to have a telemedicine consultation. Studies show the clinical and financial benefits of obtaining a pathology second opinion. Here are seven tips for seeking second opinions for prostate cancer: Before getting a second opinion, its important to know your stage of prostate cancer. A few weeks later and just before my meeting with my new Johns Hopkins Dr I get the second opinion results from both biopsy and MRI. Note respondents were able to, MeSH - Prostatic adenocarcinoma, Gleason score 3+4=7 (grade group 2, pattern 4: 5%) involving 1 of 2 cores (lateral core: 4 mm, 35%), 0.1 mm to the blue inked tissue edge 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. I would appreciate hearing from that 2.8% out there who have an intraductal component. Bethesda, MD 20894, Web Policies For these reasons, it is a good idea for HMO members to get a second opinion and make sure they are informed about clinical trials or other promising new treatments. Other labs for second . Hope to hear from a bunch of people. However, seeing him will be another 8 weeks, but he wants my biopsy slides (second opinion) before we meet. ADC: mean 879 / median 839 / st dev 223 No two cases of prostate cancer are alike and an accurate diagnosisis critical to developing the best treatment plan. However, learning more about prostate cancer and prostate-related health issues can help optimize health. Due to the spread of the Coronavirus worldwide and the first confirmed case of the Coronavirus disease in Turkey, the executive team of the Anadolu Medical Center has taken preventive measures to protect the patients and their relatives. He also said I would tolerate any option well based on my age and health. With AHN Cancer Institute, you already get a world-class cancer program with leading expertise, care, and outcomes. Over kill and redundancy I know, but it's my money, my prerogative. Getting a second opinion from us is easy, convenient, and all done remotely. Based on this forum, Im very lucky for this outcome. Whether you want expert confirmation, lack understanding or confidence in your treatment plan, have a rare or unusual type of cancer, your cancer isnt responding to current treatment its reassuring to know that you have options through a second opinion. One Johns Hopkins study showed that out of 14,000 men who had surgery and were found to have Gleason 6 cancer confined to the prostate, "zero of those 14,000 men had lymph node metastases. 1. Original Sloan Biopsy Results: Nor did I have any idea that the 1 core had 20% involvement and <5% pattern 4 involvement. Also, in 2018 I had an exosome Dx test which scored 45.34, but I also retook that test this year and it went down to 30.79. Interesting differences: According to The National Institute on Aging, prostate problems are common after age 50. * Extracapsular extension: Possible involvement of the anterior We experienced information overload and decision/analysis paralysis. images and markedly reduced ADC. 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. 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. It got discussions started and questions answered. I frequently make a 2 hour car ride and I have to stop about 25% of the time and when I don't, the urgency is a bit more evident and with the urgency come some hesitancy, but not terrible. Here's what JH says (same lesion). Urologists at the Johns Hopkins Brady Urological Institute can make the difficult process of deciding on a treatment plan easier. ORIGINAL MRI REPORT (local radiology group): Bladder: Normal. Confounding this, I have read that the different genomic tests can disagree with each other, and that Oncotype is usually a more aggressive finding. Then about a month later I started 28 fractions of Proton Radiation.It was painless. 8: Prostate, left lateral base Six weeks later I have the biopsy in his office and a week later I get the results. 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. 7 People with PN had an increased likelihood of: 6 Eating disorders Self-harm But, after 4 drinks or if I'm tired/jet lagged I find that sleep is more appealing than sex. In other words, the cancer is still contained within the prostate. The percentage of tissue with carcinoma is 70% I had two no-risk, non-invasive tests: a Free PSA with an adverse score of 9% and a PCA3 test with a disappointing 41. The main purpose of the prostate is to produce semen, a milky fluid that sperm swims in. I appreciate all the input because I am a little overwhelmed and confused as to the best course of treatment. So my question for you is have you ever heard of PRECISE and if so what should I make of it? In adjusted models, obtaining a second opinion was not associated with receipt of definitive treatment . __________________________________________________________________________July 2022I've neglected to make journal entries for a couple years, so I will recap below and continue with what I have done and what I have learned.In 2018, at the age of 48, after a routine physical that showed a PSA of (4.X) and after a TRUS biopsy, I was diagnosed with PCa. The results were ambiguous. 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). T2W MRI score= 5, DW MRI score= 5, DCE MRI score=positive 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. 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. Johns Hopkins second opinion - nothing found. Want confirmation about a diagnosis or treatment. I didn't study for the test and it's possible some morning activities might have affected my test score :) 2019 Jan;69(1):7-34. doi: 10.3322/caac.21551. For cancers that are less common, second opinions can offer more treatment options. In some situations, insurers will even insist on a second opinion. My profession for forty years was health actuary consultant, so I have a pretty fair understanding of health data, outcomes, and risks. Your Primary Care Physician referred you to your diagnosing urologist whom you now trust. 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. 3. The people were great. In those cases, patients are tremendously grateful for having received the advice and encouragement to get a second opinion, Dr. Matasar adds. 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. Prostate cancer is the second-most diagnosed cancer in American men. A enlarged prostate can also cause blockages in the urethra. Second opinions are more likely to be comprehensive, or inclusive of every possible perspective, when performed in a cancer center with a multidisciplinary team, which usually includes surgeons, oncologists, radiation therapists, and sub-specialist oncologists. Three lesions: 1) GS 6 involving 30% of one core; 2) GS 6 involving less than 5% in one core; and 3) GS 6 involving less than 5% in another core. We prioritized treatment as AS, FLA/TULSA (if a lesion ever presented itself), and Proton Beam Radiation. * PIRADS v2 Score: 3 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. Reasons for obtaining a second opinion from urologists. Getting a Second Opinion The best time to seek a second opinion is before you start treatment. 2 of the 12 samples showed High Grade PIN and one area showed "suspicious for low-grade adenocarcinoma". I've been on AS for two years after my initial TRUS biopsy showed 3 cores 3+3 (10% volume) on Right side, and 2 cores 3+3 on Left side. A doctor may prescribe surgery or perform an endoscopic procedure. Emotional outlook is fragile at times and straight clinical approach of doctors does not help. There is no bony or bulky nodal disease in the pelvis By taking the extra time to seek a second opinion, you have a better chance at finding the most up-to-date approach and an experienced doctor. 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 .