So, I go one better, I call up Johns Hopkins and find a Dr who does DaVinci Prostate Surgery. Unfortunately, what you do not realize may harm you! Video consultation and written report from your expert. A enlarged prostate can also cause blockages in the urethra. However, that information will still be included in details such as numbers of replies. Benign Processes: Getting a second opinion on a diagnosis can reverse a diagnosis or alter the treatment plan. I was disappointed that only TRUS was being used, but I did find out that this was for screening only and IF you pass screeningthey use MRI guided biopsy for post-ablation follow up. 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). Note respondents were able to choose more than one reason. Your email address will not be published. Therefore, the value of these second opinions remains unknown. FAX 310-574-4002 Ask us questions on this webpage. First of all we would like to emphasize that the health of our employees, our patients and their relatives is our first priority. Specimens Submitted: 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. The presence of any G4 has been my trigger to seek treatment. )I contacted Dr Busch (still in Chattanooga at the time) and he called me directly to talk me off the ledge. Avoiding obsolescence in advanced prostate cancer management: a guide for urologists. I really liked the new group I went to as they identified the lesion right away, unlike the radiologist who performed the first procedure, and they also have a urologist on staff as well monitoring everything. In other words, can I have a team here in Wisconsin yet travel elsewhere to get my MRI? A small early-stage clinical trial found that a carefully selected group of patients who responded remarkably well to chemotherapy could skip surgery altogether. There are three main types of doctors that manage prostate cancer: urologists, radiation oncologists, and medical oncologists. Reinterpretation of imaging scans and lab tests. 3 months has passed, and its time for a PSA and a plan to have an MRI. This is a PI-RADS 5 lesion in Thank you for your participation! The total number of cores identified is 3 Im currently 67 years old. 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. Other: There is trace ascites in the mesosigmoid. That said, I have some questions that I derived, keeping in mind that 99% of what I have learned since February has come directly from this group: Sought Johns Hopkins second opinion of pathology slides. My urologist has decided we'll go ahead with the MRI due to the continued elevated PSA scores, in addition to the overall PHI score. It was easy. Primary Gleason grade: 3 I am also talking with Dr Nour and Dr. Walser and possibly others to see if I am a good candidate for Focal Laser Ablation. 2011 Feb;29(1):3-9. doi: 10.1007/s00345-010-0602-y. Confounding this, I have read that the different genomic tests can disagree with each other, and that Oncotype is usually a more aggressive finding. Netto says patients should be proactive in requesting that doctors take another look. Over 80,000 specimen cases are seen at Johns Hopkins each year. With no travel needed and no red tape, its easy to get a second opinion, all from the comfort of your home. Second opinions offer different things in different circumstances, Dr. Matasar says. So I initially thought this makes me a good candidate for AS. 2. 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'm leaning towards SBRT. Need guidance choosing from multiple treatment options. 2. 2. 1st opinion. Another DRE that results in identifying that my prostate is enlarged, but cant find and nodules. At Another Johns Hopkins Member Hospital: Masks are required inside all of our care facilities, COVID-19 testing locations on Maryland.gov, Prostate Cancer Treatment: What to Know About Active Surveillance. We specialize in minimally invasive procedures to treat BPH, including: For selected BPH patients, our specialists also perform transurethral resection of the prostate , a procedure that requires no incisions and has a high rate of success. International Patients: How to Request a Remote Second Opinion The Stanford Medicine Online Second Opinion program offers you easy access to our world-class doctors. The symptoms of acute bacterial prostatitis are similar to those of CPPS. Does that mean my Gleason Score based on my biopsy would be less than a Gleason 6? Another type of prostate issue is chronic prostatitis, or chronic pelvic pain syndrome. 2 of the 12 samples showed High Grade PIN and one area showed "suspicious for low-grade adenocarcinoma". PSA: 4.7 ng/ml/PSA density: 0.27 ng/ml2 Similarly, among those who received definitive treatment, second opinions were not associated with receiving surgery. restricted diffusion. Expert review of your case by a Cleveland Clinic specialist. However, older men 75 years were the least likely to report obtaining a second opinion due to dissatisfaction with their initial urologist. Yet none of my doctors ever mentioned it! I worked out every day. NONE of the many radiation oncologists, surgeons or urologists I've spoken with in my journey have ever mentioned the term to me so I had to look it up. In addition to providing a better understanding of your diagnosis, a second opinion can also shed new light on treatment options and give you confidence in how to proceed with your care. There are also some cases of the test showing no depletion but being wrong. No definitive evidence of distant metastatic disease is seen." Patients may experience a fever or chills as a result of the infection. Blessings. Know Your Stage. Seminal vesicles are normal. Second Opinions in Prostate Cancer - American Council on Science and Health It starts many years ago. This puts PCPs in a unique position to impact the treatment decisionif they only refer to urologists and not to radiation oncologists or medical oncologistssurgery is a likely treatment outcome. The PSA Doubling Time parallels my Urologist Doubling Time (I keep changing Uro until I find one who makes sense)! Youve just been diagnosed with prostate cancer. So off I went to see a community urologist who performed a needle biopsy in his office. On the first scan (post FLA) a lesion was identified by the local radiologist that performed the scan, but the FLA radiologist that performed my procedure was over reading and monitoring my care and stated strongly that there was no cancer. Brief MRI history. After much discussion we both agreed that surgery was my best option and that he would do it at the end of July. Six weeks later I have the biopsy in his office and a week later I get the results. TZ zone more beneficial, but fairly large compared to whole gland and proximity to capsule edge would likely mean treatment would be suggested. I have a history where Foley catheters were unable to be placed going back to 2005 for unknown reasons. Prior to the results, the oncologist said that the literature shows that a 3+4=7 with less than 5% pattern 4 behaves just like a 3+3=6 and basically is an indolent tumor. Finally, things are set and I know what is going to happen. If the problem is unresponsive to other treatments, your doctor may suggest a surgical procedure. 10: Prostate, right anterior MRI lesion And again, most of you tell me time is on my side, so I am comforted in hearing that. Types of questions that pathologists often address in our second opinions: I had a 3T mp MRI with coil bed, without and with contrast, at Emory on March 3. Using an Ellipsoid Volume the dimensions would give you a volume of 20.44. Men with a college education or beyond also were more likely to cite wanting more information about their cancer as a motivation for a second opinion . During the next 4 weeks I meet with the recommended Radiologist, and the two local surgeons. 8: Prostate, left lateral base Get a Second Opinion: Johns Hopkins Kimmel Cancer Center Unfortunately, the 12/20/20 PSA reading was higher and that led to an MRI on 2/2/21 when two lesions were discovered. I would feel much more comfortable, if the numbers stay the same, being involved in a recognized Active Surveillance Program. You're at greater risk if you're Black or of African ancestry. Adenocarcinoma: I did a book review with his first book for several veterans groups including the Americal Division Veterans Organization which with I served at age 19. What have your doctors told you? My most recent biopsy resulted in two cores with Gleason 4+3=7 and one with 3+3=6. 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. 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've tried to find out about Dr. Wong but there's very little info on him. About 80 percent of prostate cancers are diagnosed at a localized stage, which means that the cancer hasn't spread outside of the prostate. A diagnosis is usually reached within 3-5 days of your slides' arrival at Johns Hopkins. Patient-initiated second medical consultations-patient characteristics and motivating factors, impact on care and satisfaction: a systematic review. Generally, the symptoms can stabilize over time. Overall, obtaining second opinions was not associated with definitive treatment or perceived quality of cancer care. Right mid anterior transition zone (PIRADS 2). LESION 2 My direct phone (mobile) number is 703-992-3662, or you can private message me via this platform. I was on active surveillance after a FLA procedure done in 2018. One core had 5%, one 20%, and one 40%. Axial T1-weighted images of the pelvis show no bony or bulky nodal disease. :) Prostate, right lateral base: I have had a CT of the pelvic area - negative and a whole body bone scan - negative. Our regional community network integrates academic specialty cancer care at Allegheny General Hospital and West Penn Hospital and at more than 20 community cancer centers throughout the region. Lesions are all small or very small. Following the advice of all on here, I need a team of doctors to manage my care. Hello, I apologize upfront for the length of this post, but I was recently diagnosed with prostate cancer (T2C) and figure more information is better than not enough. These results, if validated in other studies, justify additional investigation on how second opinions can contribute to increasing the value of cancer care, the authors concluded. Some men will have a very enlarged prostate, whereas others will have a mild enlargement. I then had the PHI test which showed PSA 8.70 and overall PHI 125.9. Instructions for Second Opinion on Pathology (Gleason score) Five years ago I had a TURP. He schedules appointments with a Radiologist and two local surgeons. The James Buchanan Brady Urological Institute, Masks are required inside all of our care facilities, COVID-19 testing locations on Maryland.gov. Johns Hopkins is home to many of the world's leaders in Pathology. I wanted to keep my options open. Heres What You Need to Know, Prostate Cancer Spotlights in 2020: A Year in Review, Find out about PSMA PET Imaging on Prostate Pros Podcast. We are vaccinating all eligible patients. It worked great (with negative pathology of the tissue) and fixed a lot of nasty symptoms and risks. Learn MoreFor more information about pathology second opinions, visit pathology.jhu.edu or call 877-546-1872. Conflicting Prostate Biopsy OpinionsWhat to Do? I am doing one in 6 weeks, regardless. We can help with your case. Atrophy 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. Reinterpretation of imaging scans and lab tests. Has anyone else run into this where the gleason score is favorable, but the genomic (specifically Oncotype) test is not? 2nd opinionBone Scan:"Mild increased activity is seen in the right symphysis corresponding to the abnormalities on the prior PET/CT examination. Because every patient is different, there are several ways to approach prostate cancer treatment. That's the good news. Knowing your stage and information specific to that stage makes you more medically sophisticated and enables you to navigate through the potential biases of surgeons and radiation therapists. This teamwork ensures the best possible patient outcomes. Prostate dimensions: 4.1 x 2.8 x 3.4 cm Prostate Cancer | Johns Hopkins Brady Urological Institute 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. The https:// ensures that you are connecting to the Asking for your comments: I can do radiation as a monotherapy. 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. Thank you! 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. National Library of Medicine The TRUS biopsy is behind me, the second opinion from Johns Hopkins is behind me, and its time for next steps. Thanks! Nov 7, 2016. * Size: 1.1 cm His second opinion just came back. We are vaccinating all eligible patients. Now the oncologist wants to perform a PSMA Pet Scan. What are your opinions of what that is, and where to get it? I am an airline pilot with exposure to radiation, jet fuels/fumes, etc. What are you doing about it? 4.5 year journey (18 months post proton beam), 4.5 Year Update (18 month post Proton Beam). These results, if validated in other studies, justify additional investigation on how second opinions can contribute to increasing the value of cancer care, the authors concluded. I've been on AS since April 2016. It is not uncommon that two different pathologists looking at the same slide come to a different interpretation and opinion about what is in their microscope! 3. Some men may have an enlarged prostate but not notice it. 5. Caused me to bleed heavily. 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. You have a rare or unusual cancer. Thanks to all of you for sharing! My urologist suggested a couple more PSA tests followed by an MRI. The Johns Hopkins University, The Johns Hopkins Hospital, and Johns Hopkins Health System. I would love to hear from anyone who has been involved in the Chicago study. Are considering a treatment that involves significant risks, such as surgery. And, even working in a fairly technical field myself, I was amazed at the technology and precision of that Proton Machine. Day 7 after surgery I took my last pain pill. If you are considering undergoing a specialized treatment, such as cancer surgery, within your HMO, it is important to inquire about the number of such procedures performed each year by the HMO and the results. No one at Hopkins has ever died of prostate cancer if he had Gleason 3 + 3 cancer." When you get a diagnosis of breast cancer from your doctor, its not uncommon to get a second opinion. 2020 Jul 21;19(1):112. doi: 10.1186/s12904-020-00619-9. When you review your pathology report and are going to be making important decisions, like treatment decisions, which will be based on the information from the pathology report. But, ultimately decided on whole gland treatment using Proton Beam Radiation.So. My girlfriend lives 2 blocks from the Emory Proton Clinic.We prayed on it and overthought the crap out of it. Adenocarcinoma: Prostate, right medial apex: Johns Hopkins said I have options of adjuvant radiation approach up to 3-4months or wait to see if there are two successive rises in PSA and then do "salvage" approach. They may defer to the recommendation of the specialist, or refer you to a doctor with limited prostate cancer experience. Pathology reports are subjective. Also these lesions did not abut or touch the wall of the prostate. We are vaccinating all eligible patients. If you choose to be treated at Johns Hopkins, you may be able to begin treatment immediately. With The Clinic by Cleveland Clinic, patients have access to Cleveland Clinics 3,500 specialists with extensive experience in all types of cancers. Many thanks for that. Younger men were more likely to cite wanting more information about their cancer and to see the best doctor as the reason to seek a second opinion . A doctor may prescribe surgery or perform an endoscopic procedure. The purpose of starting this discussion is to gather peoples thoughts and opinions and actual experiences with Prostate Focal Laser Ablation. Even at the age of 48, he thought I would be a good candidate for AS. If I don't meter fluids before bed, I can expect to get up 3-4 times in the night.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. What is NOT OK is quitting or avoiding the bad news, or handing the entire decision over to someone else.Good luck fellas! If pain is present, a digital rectal examination will reveal hard areas. 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. No two cases of prostate cancer are alike and an accurate diagnosisis critical to developing the best treatment plan. 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. 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. A second opinion can accomplish a number of things. Greatest dimension 2cm. To learn more about how to get a Neuropathology second opinion, please visit our Neuropathology Division second opinions website. Doctors are skilled at pitching the treatment they specialize in. The lesion also shows focal increased permeability. In the mean time my PSA was movingno longer static, but never back up to 6. Perineural invasion is identified The review process normally takes several days, after which we will send your slides and other materials are returned. Prostate, right lateral apex: 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. Most choose treatment they originally planned to follow, study finds. With world-renowned expertise, multidisciplinary specialists and the latest data, we partner with you to make informed decisions about managing your prostate cancer. You may be concerned that the cancer will grow rapidly out of control before you are able to get a second opinion. Different institutions have different levels of experience when it comes to analyzing prostate biopsy samples and interpreting imaging results. Only one core was diagnosed with a small amount of 3+3 (it was one of the three targeted cores). They also determined there was extrapostatic extension because there was some fat in the sample that involved the cancer. Contact us or find a patient care location. peripheral zone signal intensity on T2-weighted images. Doctors can review their peers treatment suggestions and explain why they agree or disagree. )As for side effectsI occasionally have some urgency/hesitancy having to pee. 7. This kills both birds with a single stone. It hasn't let me down. 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 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. It is best to begin by talking with the doctor who made your initial prostate cancer diagnosis. Learn more: Vaccines, Boosters & Additional Doses | Testing | Patient Care | Visitor Guidelines | Coronavirus. We will give that a shot and see how it turns out. Reasons for getting a second opinion include: You want to be sure you have explored all options. 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. I still have some urgency and frequency issues, but I am not complaining too bad. To schedule an in-person visit for a second opinion or to determine if a telemedicine consultation is possible, call: In addition to cancer, our urologic team provides second opinions regarding urinary stone disease, urinary tract reconstruction, incontinence, male infertility and sexual health, and many other urologic conditions or procedures.
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