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7. Overall PIRADS Score: 5/5 If they have an enlarged colon, their physician can perform a TURP procedure. Prostate, left medial apex: "We were surprised by the relatively large percentage of men who obtain second opinions for their prostate cancer," said lead author Dr. Archana Radhakrishnan of Johns Hopkins University in . Adenocarcinoma: Mohamad Allaf, M.D., answers questions about prostate cancer diagnosis and treatment options and discusses robotic prostatectomy at Johns Hopkins. I wanted to keep my options open. 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." 4 Get a Second Opinion Dr. Jonathan Epstein explains the benefits of getting a pathology second opinion My first PSA was 8.03. Netto says patients should be proactive in requesting that doctors take another look. 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. The primary goal is to be cured with the least toxic, most effective approach. U.S. News & World Report ranked the institute #7in the country. Find more COVID-19 testing locations on Maryland.gov. The total number of cores with carcinoma is 3 Thanks for Everyone's Help, I didn't study for the test and it's possible some morning activities might have affected my test score :) All Gleason 6 (3+3). By seeking second opinions and hearing the benefits and drawbacks of a range of treatment options for your specific stage, you will be more equipped to make educated decisions. )I contacted Dr Busch (still in Chattanooga at the time) and he called me directly to talk me off the ledge. 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. -------------------------------------------------------- The side effects of the cut, radiate, hormone regime are unacceptable to me. 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. 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. About 80 percent of prostate cancers are diagnosed at a localized stage, which means that the cancer hasn't spread outside of the prostate. Someone advised to always get my PSA checked at the same facility in order to make sure the same protocol and lab is used, is that critical? Epstein, who views about 12,000 slides a year, called for calm in my case and suggested another biopsy in six months. Masks are required inside all of our care facilities. Learn more: Vaccines, Boosters & Additional Doses | Testing | Patient Care | Visitor Guidelines | Coronavirus. Second opinions apply to biopsies and imaging as well. Even if someone is being seen at a different academic center, the trials and other treatment options that we offer here may be different. Two weeks later I meet with my Johns Hopkins Dr. The results were ambiguous. 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. I was referred to a urologist and tested again in April at 4.40. Usually, patients obtain a second opinion after being referred to a second physician or to a special team of experts in a cancer center, called a multidisciplinary team. There are so many different departments at Hopkins that I don't know the optimal department to contact. Y'all are in my prayers! For cancers that are less common, second opinions can offer more treatment options. I was diagnosed with a 3T MP MRI and a 3T MP MRI guided 4 core biopsy. Two things you learn here is get a second opinion from Johns Hopkins on biopsy and get treated at Center of Excellence. Reinterpretation of imaging scans and lab tests. Cancer. 7: Prostate, left lateral apex 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. The biopsy took 12 cores, two from each lesion area and 8 randomly. However, older men 75 years were the least likely to report obtaining a second opinion due to dissatisfaction with their initial urologist. Are you sure you want to block this member? One core had 5%, one 20%, and one 40%. After a second opinion from both Johns Hopkins and Stanford, the two 4+3's were downgraded. Learn more through his bio: Progress in the field.In recent years, advancements in research have changed the way cancer is treated. I had a telemed session with Dr. Chang, and it sounds like a pretty simple procedure, with urinary side effects that resolve pretty quickly. Hopkins states that the one positive core (10% G6) was visualized by the MRI, so I am hoping that this increases our chances of making it through the screening process. )I contacted Dr Busch (still in Chattanooga at the time) and he called me directly to talk me off the ledge. I would really love to hear from you. I am also doing a vegan diet with additional complementary substances. 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. This condition causes pain in the lower back and groin area, and may cause urinary retention. Does that mean my Gleason Score based on my biopsy would be less than a Gleason 6? Right mid anterior transition zone (PIRADS 2). 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. images and markedly reduced ADC. 3. Generally, the symptoms can stabilize over time. It also rules out Brachytherapy. ORIGINAL MRI REPORT (local radiology group): The results of the MRI said they found a PYRAD 5 lesion, but did not find any cancer outside prostate. Lesion #1 (index): PI-RADS v2.1 score 4, lesion measuring 10 mm centered at the right mid/apex posteromedial peripheral zone; findings equivocal for extraprostatic extension; no evidence of seminal vesicle invasion; The low ADC value in this lesion increases the likelihood of Gleason grade group 2 or higher. Do second opinions matter in prostate cancer care? - ecancer Dont Miss: Screening For Prostate Cancer Icd 10. So the pathologist suggested a second opinion. 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. When first diagnosed with prostate cancer, your PCP will generally refer you to a urologist for a biopsy. * He said probably not candidate for watchful waiting because of tumor volume shown and seen on MRI. Clipboard, Search History, and several other advanced features are temporarily unavailable. Even for men with faster growing, more aggressive prostate cancer, taking the time to seek a second opinion should be a priority. And, even working in a fairly technical field myself, I was amazed at the technology and precision of that Proton Machine. My current situation is age 67, no health issues, never had erectile dysfunction or incontinence, 6 tall, 175 lbs, generally fit and active. Five years ago I had a TURP. Had third MRI in July 2019 this time at Mayo which I believe does a better job than SMIL. 4.5 year journey (18 months post proton beam), 4.5 Year Update (18 month post Proton Beam). Dont Miss: Is Coffee Bad For Your Prostate. 53 years old Enter the last name, specialty or keyword for your search below. Following his residency in anatomic pathology at The Johns Hopkins Hospital in Baltimore, Maryland, and a fellowship in oncologic pathology at Memorial Sloan Kettering Cancer Center in New York., he then joined the staff at The Johns Hopkins Hospital and has been there his entire career. The total number of cores with carcinoma is 3 You May Like: Sbrt Radiation Therapy Prostate Cancer. 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. Patient-initiated second medical consultations-patient characteristics and motivating factors, impact on care and satisfaction: a systematic review. 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. I was on disability from work the entire time (not that I was disabled, but as a pilot, I couldn't very well work and get treatment at the same time. These findings are suspicious for degenerative changes however a subtle/early metastatic lesion cannot be excluded and continued periodic follow-up is recommended." Us Too Prostate is a great club and many of you have helped me a lot already. Everything seems to be on track to remove the cancer and be cured! Getting a Second Opinion The best time to seek a second opinion is before you start treatment. H. Prostate, lesion #2, core biopsy: not hear all the viable treatment options or receive the most up to date I've also read that some study's have shown that intraductal may be resistant to hormonal therapy, radiation and/or chemo. What is NOT OK is quitting or avoiding the bad news, or handing the entire decision over to someone else.Good luck fellas! 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. Based on the results, our experts can provide you with an individualized treatment plan before you leave. Im currently 67 years old. I did genetic testing and there were no mutations of concern, and everyone agreed that there probably wasn't "enough meat on the bone" to get a good genomic test from the biopsy.After seeing Dr Joe Busch, he said he didn't see any target lesions (PIRADS2), nor did he think I was in any danger. With world-renowned expertise, multidisciplinary specialistsand the latest data, we partner with you tomake informed decisions about managing your prostate cancer. Unlike pathology labs in most hospitals, Jonathan Epstein's lab at Johns Hopkins has pathologists who specialize in reading prostate tissue samples. I am 58 and in very good health otherwise. They also determined there was extrapostatic extension because there was some fat in the sample that involved the cancer. Youve just been diagnosed with prostate cancer. An accurate diagnosis is essential to ensure the most effective treatment. But, after 4 drinks or if I'm tired/jet lagged I find that sleep is more appealing than sex. There is no extraprostatic extension. You're more likely to develop prostate cancers that are more likely to spread. Prostate cancer is an Jonathan Epstein, M.D. 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. If a targeted biopsy is planned, this lesion can be sampled at the same time. Would you like email updates of new search results? Estimated prostate volume of 35 cc with an estimated PSA density of 0.11 ng/mL/cc. This is a PI-RADS 5 lesion in I'm 58 yrs old and had a TRUS random biopsy October 2020 after my PSA continually stayed between 4.4 and 8, and PHI score was 126. Younger men also sought the 'best' doctor. Recently diagnosed a Gleason 3 + 3. Therefore, the value of these second opinions remains unknown. Surgery took about 3 hrs. Dont Miss: New Treatments For Stage 4 Prostate Cancer. The problem is that all 3 pathologies noted an intraductal component. Recovery from Prostate Cancer | Bills Story. While the size of an enlarged prostate will influence the extent of urinary symptoms, men may experience a range of urinary symptoms. I also changed my diet to plant based food, started juicing, and started taking supplements (think Turmeric, Green Tea, etc.). 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. The symptoms of acute bacterial prostatitis are similar to those of CPPS. Best wishes to all those whose concerns for the day are far more serious than mine. 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 tried to send the samples out for genetic testing to Prolaris and Decipher, but there was an ordering error and they never went thru. I certainly would - after all, there's a certain brotherhood bond here. He turned to the Top Gun of Prostate Pathology: Jonathan Epstein, MD, the guru of Gleason scoring at Johns Hopkins University in Baltimore. Dr. Jonathan Epstein of Johns Hopkins University Hospital. Prostate, right lateral apex: 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. Medical record collection from doctors and hospitals. The https:// ensures that you are connecting to the Some men may have an enlarged prostate but not notice it. Prostate, left medial base: He is the past president of the International Society of Urological Pathology. 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. Here are the details: Prostate volume: 17.58 cc -------------------------------------------------------- Ask us questions on this webpage. 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. Pathology reports are the opinion and interpretation of the individual pathologist viewing the tissue samples. And just this week, 1 YEAR post treatment, it is .46. If I am rested, I find that I am more ready than if I am not. Methods: Prostate Cancer Grading: 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. However, there are other cases when a second opinion results in a very different diagnosis or set of treatment recommendations. Depending on your location, you may be able to have a telemedicine consultation. Which Patients Report That Their Urologists Advised Them to Forgo Initial Treatment for Prostate Cancer? They replied they are sending the slides but they said they're looking into the DX test and will get back to me once they have that information. BASE DATA: 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. While I have three lesions, they are small and, without 3T mp MRI, might not have been discovered. We used multivariable logistic regression models to evaluate the relationship between second opinions and definitive prostate cancer treatment and perceived quality of care. The percentage of tissue with carcinoma is 70% Seeking a Second Opinion - American Cancer Society He also said I would tolerate any option well based on my age and health. 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 . The purpose of starting this discussion is to gather peoples thoughts and opinions and actual experiences with Prostate Focal Laser Ablation. They hesitated calling it a TARGET LESION, but scored it PIRADS 4. Every year I got a PSA and DRE during my annual physical. 7 Tips for Seeking Second Opinions For Men with Prostate Cancer I had my first of those 2 PSA tests last week and it dropped to 4.77. Receiving a second opinion was not associated with perceived quality of prostate cancer care. Anything I am overlooking or need to add to my list of considerations? Anyhow, as for treatment, yesterday I met with a Dr. William Wong at Mayo Phoenix. Getting a second opinion from Johns Hopkins, is it free or does one have to pay for it? Maybe lycopene and pomegranate have helped. I am relatively new to this forum and trying to educate myself as to my best course of treatment. 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. 2 of the 12 samples showed High Grade PIN and one area showed "suspicious for low-grade adenocarcinoma". My thoughts focus on the fact that I have a disabled son who needs my care. Of course that was before I found this webpage and I really didn't know what 1 core of 18 samples showing 3+4=7 Gleason meant. Just took time off and then life happened.Thanks in advance for the insights. Have a condition that isnt improving or is getting worse, despite treatment. My questions are: The results of Oncotype came back and it was a bad report. Identified an approximate 2 cm lesion of mostly Gleason 7 (3+4) with only 20% being 4, contained in prostate. My mind goes all over the place as to why this is. Second Opinions An accurate diagnosis is essential to ensure that the correct and most effective treatment is given. 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. I can do radiation as a monotherapy. Thank you for your participation! Second Opinions (Adults) For stem cell transplant, please call 1-773-702-1994. They hesitated calling it a TARGET LESION, but scored it PIRADS 4. * Prostate size: 3.9 x 2.8 x 3. cm An increase of 1.1 in 3 months is not good news. A PSA test at time of biopsy revealed my PSA had risen to 6.5. Reinterpretation of imaging scans and lab tests. Potentially inaccurate results can lead to selection of the wrong type of therapy. Benign prostatic tissue The prostate gland is slightly enlarged secondary to transition zone hyperplasia (25cc total) Seeking second opinions is becoming standard practice, and it is mandatory at Johns Hopkins. 5. He recommended waiting and watching at that time due to the lower PSA reading. Prostate, left anterior MRI lesion: I hope my story helps anyone out there just starting the process. When people recommend going to a Center of Excellence, believe them. The Stanford Medicine Online Second Opinion program offers you easy access to our world-class doctors. The linear amount of tissue with carcinoma is 23 mm I am also not comfortable making a decision based upon 1 genomics test, when my other prior test(s) disagrees and the gleason score disagrees. Negative cancer in lymph nodes, seminal vesicles, and all margins. Prostate, right anterior MRI lesion: He never sought treatment for the injury. So, I asked the Radiologist if she will schedule one for me. Radhakrishnan A, Grande D, Ross M, Mitra N, Bekelman J, Stillson C, Pollack CE. All views would be appreciated. So, I made an appointment at Emory Proton Center (Atlanta, GA) and got their opinion. About this time, I started reading this forum and my ignorance starts going away. PI-RADS v2 score: 5. Notice of Privacy Practices(Patients & Health Plan Members). Natural history of progression after PSA elevation following radical OTHER: None. Get a Second Opinion: Johns Hopkins Kimmel Cancer Center 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. I now have my list whittled down to 3. * IF ANYONE reading this doesn't believe in the value of MRI first and targeted biopsy next then take note that my systematic biopsy cores showed 0 positive in 8 cores and my MRI guided core samples were 6 for 6 being positive! Because I had an implant in my ear, they would only give me a 1.5T MRI. Get a Second Opinion I have developed an "abscess" on my prostate. Low post-void residual volume is They seem to think it'll do the trick.I feel great and I am glad I chose this treatment path. Other: There is trace ascites in the mesosigmoid. In terms of cancer, changes can be from cancer to benign (or vice versa) or from one type of cancer to another, which could have a significant impact on treatment and prognosis. My biopsy report does not mention a GS and the second opinion from Johns Hopkins did not list a GS either. And should I treat prostatitis before FLA? I retired as a Dentist at the VA and saw many veterans with a wide range of outcomes as most of them became 100% service connected when diagnosed with prostate Ca due to exposure to Agent Orange if they served in Vietnam. How much is the fee for an opinion of my recent MRI?